Any discussion on the topic of Verapamil in any of its forms or various applications
Hawk, Administrator Posted: Mon Jun 27, 2005 5:51 am
Under another topic Kelvin mentioned "I was getting the second or third of my bi-weekly Verapamil injections. (I'm now at number 8 with more small plaque spots newly discovered"
I am pretty interested if you see any indication that the Verapamil injections (VI) are actually doing any good?
Are there any indications the VI are causing any more plaque?
If yes to either of these, to what degree is it having an effect and what are the indicators.
Kevin Posted: Tue Jun 28, 2005 3:01 am
It's so hard to know what is due to treatment and what would have happened anyway without teatment. My initial curve remained the same: banana-like and maybe 45 degrees. The pain went away around the time of the first injection (almost three months after onset) but the curve very soon after that became a sharp bend upward starting at about the last third before the tip. Since that bend alone quickly increased to over 80 degrees, I was tempted to blame the injections and did halt them for one month (the normal interval is two weeks). I resumed because there was a small new filmaent-like growth of plague further towards the groin during that hiatus.
At my request, however, the Uro doubled the dose to the recently adopted new maximum of 20 mg and administered more anesthetic to numb the penis completely during the injection and the needling of the plaque. I wish I could tell you definitely that I regret or don't regret the treatment. I don't yet know and may never know. To make the "experiment" more fuzzy, I've also been adding more and more of the often reccommended OTC supplements as well as a couple of the usual prescription drugs to my regimen. The only good news is that the pain never has returned and erections are strong (if steadily stimulated) but at nearly 90 degrees, they are not much of an asset. Being single makes the advice of having sex as much as possible difficult to carry out and there is little hope of a relationship starting under the circumstances..
Posted: Wed Jul 06, 2005 2:17 am Post subject: Want to know more
"...First is Verapamil Injections (VI) if you want to risk injections that some say (including leading urologists) can aggravate Peyronies Disease. ..."
As someone still undergoing injections with no improvement (and some worsenening through the same period), I'm interested in who the doctors are that say the treatment can aggravate the condition. Where can I read those opinions?
Hawk, Administrator Posted: Wed Jul 06, 2005 8:18 am
Quote:"As someone still undergoing injections with no improvement (and some worsenening through the same period), I'm interested in who the doctors are that say the treatment can aggravate the condition. Where can I read those opinions?" KEVIN
Kevin, I feel responsibility to be cautious when dispensing information directly to someone that may influence treatment decisions. My information is second hand but it is from a source that I consider having good first-hand information. That source told me that unless there has been a change in the last several years that Dr. Lue and Dr. Padma-Nathan do not do them, and advise against them.
That is the extent of my knowledge on well know urologists being opposed to VI. While I am certain of the accuracy of this information, it is old and these doctors may have changed their opinion. My understanding is that Dr. Lue is possibly the single most respected Peyronies Disease Urologist in the country, but as I said above, I am not even sure what that means.
Based on this scanty information, you will have to do your own research. I believe that it may be as easy as calling Dr. Lue's office and asking if he gives VI. I know of no conclusive objective studies that would promote or condem VI.
Dr. Tom Lue San Francisco, CA
Tel: 415 476 1611
Fax: 415 476 8849
This is a good place for others with any information to jump in and help.
Kevin keep us posted if you discover any more information on this topic. Sharing this information is one of the main ways we can help each other.
My ED/Peyronies Disease doctor told me about 16 months ago that he had used verapamil injections on 12 patients .... 2 improved, 2 worsened, 8 unchanged.
I am currently 2 months into TV treatment. Am showing improvement in curvature although not as fast as I hoped. At the rate of improvement, I'm probably looking at a year's treatment, assuming it continues to improve at current rate.
I'll add his comments on other treatment techniques that I asked about. Again, this conversation took place 14 months ago.
- Ionophoresis with verapamil ... requires expensive equipment that he does not think is needed.
- Colchicine ... does not work.
- Cold Laser Light Therapy ... At least one case of serious injury.
- Exracorporeal shock-waves ... worries about the trauma.
- Potabo .... works, about the same cost as TV
- Vacuum Pumps ... has heard of a couple of patients who tried it but does not know results or of any formal studies.
- Tamoxifen ... not familiar with it.
- Collagenase Injections ... sorry, we discussed but I did not record his opinion.
Hawk,
You are correct, Tom Lue does not use Intralesional Verapamil to treat Peyronie's unless he has had a recent change of mind. I know he has prescribed Colchicine, which in itself is a very harsh drug with side effects.
Now you may get some argument from the other top Peyronies Disease doctors that he is the best in the country, but he certainly is in the top group.
One would have to surmise that Dr. Lue considers the invasive nature of IV to pose a risk of additional damage. However, the only paper I've seen him author on the subject did not give his pro or con view, only a review of the nature of the treatment.
Larry H
I'm glad I found the PDPDF. Finally, I can get some information from 'experienced' patients.
I was diagnosed with Peyronies Disease about a month ago when I developed about a sharp 45 degree bend up near the end.
My urologist has put me on topical Verapamil with the advice that it probably wouldn't do very much...so far, he's right. His next course of treatment in Injections :o which I'm leary of just based on the idea of a needle stuck in my penis! In my web research, I've seen some reports of possible complications of the VI (like more nodules), so I've been looking at alternatives, and came across Iontophoresis.
I've had contact with Dr Levine in Chicago, who's run studies on Verapamil applied by iontophoresis (hmm, can't call it VI, that's already taken; perhaps IV?), but his studies are currently closed to new patients. He did offer a office visit or phone consultation and if he considers it appropriate, he can supply the equipment ($1000) and medications ($150). Of course, this isn't covered by insurance!
SO, I'd really like to hear from people who've undergone either the VI or the IV (looks like roman numerials) to help me decide to go with the needle, or the electricity. Anyone out there who has free advice?
Where are you getting your TV?
My doc recommends waiting until your situation stabilizes before beginning TV. This is just my opinion, but I am guessing it is because you may still be worsening and the effect of the TV (or any treatment) might not be recognized. I worsened for over 18 months before stabilizing.
Well, on my first visit to the urologist, I explanied my history - Trauma sometime about February, and the bend noticed around mid-April. He looked at my pictures, and gave me an exam. Then he explained that his 'normal' treatment consisted of Topical Varapamil for 5 weeks or so, and if no improvement, he'd move to Verapamil injections. There was no mention of waiting 18 months or so for things to stabilize.
I'm not a doctor, but why wait while things get worse? As I see it, why not try and 'nip it in the bud' so to speak.
Anyway, at my last visit, I asked him about using Iontophoresis to administer the Verapamil, but he was totally unfamiliar with the practice ??? and mentioned that they don't have the equipment anyway. He was ready to start injections right away, but I told him that I'd like to wait another month or to to see if the TV shows any progress (and to let me find out more about Iontophoresis). Well, from my earlier post, I've found that I can get the equipment, but I'd have to pay for it all (>$1000) and have to coordinate over the phone with a doctor in Chicago! Not sure I'm ready for that either. I'll probably just go with the injections and see what happens.
I'd still like to hear from others who've already undergone injections or iontophoresis to get some first-hand results.
Where are you getting your TV?
We've got a local pharmacy here in town that made the 'compounded' prescription. I couldn't get it at the CVS chain pharmacy as it wasn't something that they stock ready made. As far as I know, they just grind up some Verapamil pills and mix it in with some kind of cream (no idea of what that is).
Interesting! Verapamil by itself will not penetrate to where it needs to go. There is a patented formulation that has been tested for peyronie's. Its possible that your pharmacist has bought rights to use the patented formulation, but, as far as I know, there is only one compounding pharmacy that mixes the patented formulation, at least legally.
Your doc doesn't sound too knowledgeable about Peyronies Disease as most are not.
Guys,
I don't endorse breaking the law but, if you are getting topical verapamil from any source other then PDL in San Antonio,Texas or Talon also in San Antonio don't publish where you are buying it on this forum. PDL will contact them and issue a patent law infringement notice. This has happened before and we don't want that to happen again. PDL could contact the Administration of this forum and ask that your posts be removed and I know Hawk well enough to know that he will comply in a half of a heart beat.
In case you don't know, PDL is involved in a legal action over patent rights with Talon.This causes PDL to be anal about anyone else compounding this formula.
Someone said earlier that the makers of T/V crush verapamil pills when they make the formula, this is not the case my friend. Verapamil comes in a liquid form. As a retired Police Officer I don't care to make posts of this nature but I will this once,please adhear to my advice, I will not do this again guys,I hope you understand.
Regards,
Barry
I wouldn't think that it is illegal to compound verapamil for use for Peyronies Disease treatment, provided the patented mixture is not infringed on. I saw another post where some guy was buying a 2% mixture for almost nothing. Doubt that this compounder was violating anything. Also doubt that it would work.
I am totally unfamiliar with the patent issues surrounding a specific mixture of TV or drugs made in a compounding pharmacy in general. I would like to hear from Will Shepherd on this issue but as of yet, he has not moved over from our old forum.
Clearly, Barry is correct, we would honor the request to remove reference to a patent violation for anyone providing evidence of the same.
If Talon had say a 5 years patend on the commpound it self there could be an issue. These pharmacy folks are pretty sneaky with the way the patent applications are completed. The idea would be to word it in such a way that it would be to hard for anybody to leagally copy any portion. That way they can make as much money as possible for the term of the patent. Then they can be the only ones getting paid. Like those damn Viagra guys. So just like viagra I'm sure the patnet will expire soon and we can enjoy generic verapamil.
Guys,
Attached is the legal notice that will explain what is going on and answer some of your questions.
Barry
From: pdlabs
pdlabs
November 12, 2003
RE: Transdermal Calcium Channel Blockers
Filling prescriptions of topical verapamil for the treatment of connective tissue disorders such as Peyronie's disease.
Please be advised that William J. Easterling, R.Ph. holds U.S. utility Patent numbers 6,031,005 and 6,353,028 for the use of topically applied calcuim channel blockers for the treatment of Peyronis's Disease and related fibrotic connective tissue disorders. Prescriptions Dispensing Laboratories, Inc., San Antonio, Texas is the only U.S. pharmacy that has been licensed to provide this medication until such time that it becomes commercially available through the FDA approval processes.
Any entity, including but not limited to a referring insurance company, physician, pharmacy or hospital that compounds, uses, dispenses, or offers for sale topical or transdermal calcium channel blockers for the treatment of connective tissue disorders, is liable for damages and other remedies under applicable patent laws (see 35 U.S.C. 271, et seq).
On September 26, 2003 PDLabs was granted a permanent injuction as well as a substantial monetary award against the owner of one of a series of componding pharmacies whom PDLabs intends to direct its patent enforcement activities. PdLabs wishes to avoid taking legal action; however, the patents will be enforced.
I suggest that you discuss this issue with appropriate legal counsel and advise all appropriate personnel and management of the existence of these patents.
Patients presenting prescriptions to componding pharmacies, should be directed to PDLabs at 1-800-687-9014. Thank you for your cooperation.
Sincerely,
Jerry Easterling, R.PH.
CEO and Patent Holder
Prescription Dispensing Laboratories
PS: I have the actual patents as written to the U S patent office in my files. They will be made public on the Peyronies Disease Coalition web site in due time.
If you type into google "us patent 6,031,005" or "us patent 6,353,028", it should take you to the online copies of the patent from the US patent database.
Flextor,
For you and anyone interested the url below is direct to the US patent office.
http://www.uspto.gov/
Best,
Barry
I have had what should be considered an unusual course of Verapamil injections. I had a rather noticeable piece of plaque at mid shaft that caused a 90-degree lateral bend to the left. I began injections about three months after discovery. My treatment lasted two years.
Initial treatment- 10mg injections once every two weeks. Usually there were 3 sticks. No anesthesia and very, very painful.
At some point the doctor began weekly treatments of 10 mg that eventually increased to 20 mg, 2 syringes and 5 to 6 sticks per weekly visit. It was torture.
Results. My plaque changed subtly over treatment but it seems to have grown to the size of a thick round dime. I finally discontinued treatment about a year ago. Since then the plaque has shrunk considerably. I now have a small thin elongated hardness of about ¾ of an inch. Is it plaque or scaring from the needle? I don't know.
Would I do it again? Absolutely not. I suffered a great deal and still have a 90 degree bend. It is my opinion that improvements and alleged cures are as likely the result of spontaneous remission rather than the result of treatment. I think we are still in the voodoo stages of treatment for Peyronies Disease.
I tend to agree with you, kbmw....but I'm definitely not as educated as the majority of posters here about a lot of the treatment options. The studies have shown that verapamil has a statistically significant effect- for whatever that's worth. When I started verapamil injections, I actually didn't expect it to have an effect. I've wondered whether I was trying to pre-condition myself against the possible future disappointment, should it not work...but I think it was more than that. Even the studies have struck me as a little dubious, just in terms of the percentage of controls that actually see an improvement.
It would seem to be an unpredictable condition, and one that changes over time. Ironically, what I've noticed are a fair number of accounts of the plaque itself going into some form of remission, but not the actual curve. To be honest? My greatest hope in terms of treatment solutions, is that they might be able to perfect less-invasive surgery techniques that are more effective, without the same number of serious potential problems or side effects. From my viewpoint, that looks like the best avenue for hope and development- but again, that's based on my own subjective analysis, and I'm not as well versed in some of the alternatives that other posters are. There are always the collagenase (sp?) trials...but my natural skepticism about their effectiveness is pretty strong. I don't think that alone could effectively straighten my 90 degree bend...there is significant structural changes that occur as well to the penis...that cause me to believe that it would be unlikely that a simple injection is the answer.
I've got a personal question that I'd like to pose, not just to kbmw, but anyone that has a curve in the range of 80-90 degrees- are you able to have functional intercourse without it hurting or effecting your partner? I guess I can predict that the answer might be that it depends on the nature of the bend...whether it's closer to the base vs. the middle (which is the case for me)...etc...
Hey Mezz,
I am around that nasty 80 degree range. My bend is right in the middle. It bend to the left and up a tiny bit. I am able to use it though anymore I really try to avoid it. It really can't take it emotionally anymore. Any way on to your question. I can use it and she says she doesn't really feel much of a difference. She notices that it is not as firm. The only pain or discomfort she feels is when pulling out. So all in all she has no problem with it. I do and that's a whole other thing.
Quote from: nick on September 02, 2005, 10:58:35 AM
Hey Mezz,
I am around that nasty 80 degree range. My bend is right in the middle. It bend to the left and up a tiny bit. I am able to use it though anymore I really try to avoid it. It really can't take it emotionally anymore. Any way on to your question. I can use it and she says she doesn't really feel much of a difference. She notices that it is not as firm. The only pain or discomfort she feels is when pulling out. So all in all she has no problem with it. I do and that's a whole other thing.
Really, really appreciate the feedback nick. It sounds like we're in a similar boat. I'm probably around 80-90 degrees, and I too would say my bend is around the middle. My erection quality remains pretty good, all things considered. Mine is twisted downwards at a 90 degree rotation as well, so I don't know how that would change things subjectively from a woman's perspective- but I think when you've got that degree of curvature, everything is secondary. When I look at it, subjectively, I can't imagine it not causing discomfort for ones partner...but the more feedback I get, the more it sounds as though that's a personal misconception of mine. I've got to say, that is something of a relief to me.
At the same time, I can say that I completely understand the emotional effect that you're saying it has had on you. I'm going through stages of trying to reconcile this with myself, and I think the possibility that sex might still be realistic is going to help me to get through one of the worst stages, which is the very fundamental issue of whether it is even possible. Now I get to confront the embarassment, and horror, of having to try and deal with the idea of actually trying to intiate a relationship while I'm aware of the fact I've got this condition during the initial phase of the relationship. Who knows what fun awaits me further (please excuse the bitter sarcasm)?
Verapamil didn't do anything for me, but maybe a VED will. It doesn't seem like there's a great deal of positive accounts of the verapamil treatment method by patients- and the fact that the treatment itself sort of seems to go in and out of favour with doctors like Dr. Lue, strikes me that it's shaky at best.
I go in tomorrow for my first Verapamil injection. After reading this, I don't feel too hopeful. A little freaked out about the pain of the injections that have been related. Doc did say he would numb my penis. My Peyronie's came on very, very fast over the course of maybe 3 weeks and I now have a very severe hourglass shape with an upward bend of almost 90 degrees. And it's painful. The plaque now covers about 2/3 of the top of my penis. Should I be at all encouraged?
Steve,
I have not had VI but I have discussed it with many, and most say that it is when there is no numbing that it is painful. I think you will find the pain very tolerable.
As far as effectiveness, that is a very mixed bag and very subjective. I would encourage you to assess plaque location and size, trace the bend, measure for length and girth of your penis, and closely assess any change.
May I ask who your doctor is?
I think others will comment here. Please keep us posted and good luck.
Hawk,
Thanks for the good wishes. I'll check back in after the first treatment. My Dr. is one of if not the top Urologist-Surgeons in the state. Dr. Taylor Floyd (don't know how he would feel about being "named" on a website). I like him and trust him. That of course, is subject to change, hehe.
I was scheduleed for VI about a month ago, after being diagnosed for about a month. Like you, my curve came on suddenly (about 45 degrees up), but luckily, I've had no pain. My Dr put me on Topical Verapamil, and after a month, was ready to start injections. I wanted to check out some of my other options that didn't include a needle, but they are few and expensive. I really wanted to try Iontophoresis, but the doctor doing the studies didn't have an open trial going, but offered to set me up with the equipment and medications for about $1200 (of course, not covered by insurance).
Anyway, when it was time for my last visit, I told him that I'd like to stay on the Topical for another month or two to give it a chance--but really, I was a little leary of the needle and wanted to check out the Iontophoresis.
Bottom line is that the 'machinery' is too expensive to just give it a try, so on my next visit (end of October), I'll probably start on the injections too. He did say that they would numb the penis, so hopefully the pain will be minimal :o
Good luck on yours, and please keep us informed.
Steve:
If it's any help, I didn't find the pain from the needles to be all that bad - and I'm someone who doesn't take well to needles of any sort. (I donate blood about 2X a year. I do it because it's a good thing to do... but find the process repulsive.) The numbing agent the doctor will use will most likely involve an injection as well -my doc used lidocaine. If for some reason the verapamil injection seems too painful, then you aren't sufficiently 'blocked' and will require another dose. Be sure to speak up during the whole process if anything is bothering you.
On another topic, I found the pre-injection evaluation to be rather awful. My doctor (actually, his nurse) gave me an injection inducing drug, then followed up with a visual exam by the doctor and an ultrasound. I had to get a second dose of drug. My follow up exam is on Oct. 11 and will involve the same kind of injection. My question to some of the other post-verapamil injection patients is, do all doctors do it this way? Is there a way around getting the injection ... such as taking a 100 mg. Viagra? The fewer needles, the better.
Bob
First injections this morning. Not horrific, but no day at the beach either. Dr. started out with numbing injections, 6 locations, which he explained as the process continued. I compared it to the dentists office, where the novicain injections are more firghtening and painful that the procedure. Yes they hurt! Dr. commented that he had never seen anyone with a mass the size of mine....sadly he wasn't referring to the size of my equipment. He immediately started the Verapamil injections, one center top at the base of my penis, two on each side and one at the end of the mass near the head of my penis. When he did the fourth injection, I just about jumped off the table. Hurt like a _____er. He left the room and returned with more "deadener" and injected two more. I was able to complete the rest of the injections. I now have a nice bruise on my penis, which the Dr. said would most likely happen. No following pain whatsoever. Oddly enough, just an erection which lasted about 45 minutes following the treatment. THAT surprised me. I am going to ask him about that next appointment. He is scheduling me for 6 initial treatments, every other week. We'll see.
My Dr. never asked for or induced an erection. He either took my word for it or the mass is so pronounced (which it is) that there was no doubt about the condition. He has never mentioned ultrasounds, photographs of my curved erection or induced erections. The plaque is so easily felt with general manipulation, that the other aspects aren't really necessary. My opinion? If it's a good Doc, do whatever he says. Of course, this is from someone who underwent his first Verapamil injection today.
Steve:
It's essential to take (and save) digital pictures in the erect state, from several angles, at various stages of your treatment. It is notoriously difficult to evaluate changes of curve, length, girth, etc., if they occurr gradually and you got used to them. The images you compile over the period may be your only reliable way to know what really improved (or worsened). Most doctors get at least an initial polaroid for their own records unless they sense the patient would be uncomfortable with the idea.
Recently, some doctors have doubled the usual 10mg of Verapamil for patients who are not especially at risk for blood pressure problems. They report it is safe but still no data about extra effectiveness. It can make anyone light-headed and woozy for up to 30 minutes, however, so keep that in mind.
Kevin
Quote from: SteveW on September 20, 2005, 11:06:27 PM
First injections this morning. Not horrific, but no day at the beach either. Dr. started out with numbing injections, 6 locations, which he explained as the process continued. I compared it to the dentists office, where the novicain injections are more firghtening and painful that the procedure. Yes they hurt! Dr. commented that he had never seen anyone with a mass the size of mine....sadly he wasn't referring to the size of my equipment. He immediately started the Verapamil injections, one center top at the base of my penis, two on each side and one at the end of the mass near the head of my penis. When he did the fourth injection, I just about jumped off the table. Hurt like a _____er. He left the room and returned with more "deadener" and injected two more. I was able to complete the rest of the injections. I now have a nice bruise on my penis, which the Dr. said would most likely happen. No following pain whatsoever. Oddly enough, just an erection which lasted about 45 minutes following the treatment. THAT surprised me. I am going to ask him about that next appointment. He is scheduling me for 6 initial treatments, every other week. We'll see.
Our cases aren't entirely dissimilar. My plaque, atleast subjectively, seems to have increased. I haven't yet had a penile sonogram, but am intending to soon enough. I can feel maybe three distinct regions of plaque- with the most major being a nodule on the left side around the middle of the shaft. This is a pretty large nodule, probably marble sized, easily. It was that nodule alone that I think my Urologist targetted uring my Verapamil injections.
I might've recommended you do some serious thinking about the VI treatments, based on your first post, but after reading how extensive your plaque is, what do you really have to lose? In my case, I believe that I might have worsened the condition through the VI treatment. I'm glad to hear that your Urologist is very good, because I think a lot of the potential effectiveness of the treatment comes down to who is doing the injections, and technique.
When I started my injections, I was only aware of the major nodule. This is pretty subjective, but I thnk that the plaque spread over the course of the treatment to most of the left side of my unit. I noticed a worsening of the curvature by about 20 degrees, I'd guess. The advice given to try to catalogue the changes in your condition is a good one. I wish I was a little more methodical with it, cause it is somewhat subjective.
I would suggest lightly squeezing the injections sites, if you'd like to avoid bruising. I know that I was very bruised during a couple of my first injections. In fact, I became swollen after one particularly intense injection session, and I've wondered retrospectively whether this caused further damage to the tunica.
I've experienced the strange erection phenomenon too. Kinda weird.
In my latest bout of desparation, I've considered going back to complete the final 6 injections. Has anyone not responded to the first six injections, or been aware of someone who didn't, but did respond to the later injections? I didn't experience any benefit whatsoever to the first round, and I even think it worsened it mildly. I don't know.
SteveW, I'm not trying to diagnose you from afar, and I know that the surgical route is not highly endorsed by ANYONE...but in cases like ours, I can't help but wonder whether the eventual solution ends up being surgery. I would definitely recommend running through the full course of possible treatments, and waiting for things to stabalize, but your case sounds pretty severe to me. I sympathize, cause I think I'm on the severe side of things myself.
I think this is a different condition all-together for individuals who have a severe case of Peyronie's. If you're talking about a 30 degree or less bend, I think the currently available non-invasive treatments should be the only way to go...but if you're looking at a near 90 degrees, your options become both more immediately needed, as well as more invasive. Again, I have to qualify these statements by saying that there are far more knowledgable posters on this board- but that these are my own judgments. I currently plan on undergoing a course of the Viagra/Pentox/N02 regimen as well as using a VED. I haven't yet begun this phase of things, but I'm going to try to give this a go for 6 months to a year, and if that doesn't produce significant results- it looks like surgery might be in the cards.
It sounds like your Peyronie's might not have even stabalized at this point. I don't know what the theory is on VI treatment before the stabalization of the condition...if I remember correctly, I think it might be preferred to try to hit earlier. Atleast my urologist seemed to indicate that.
mezz,
Thank you for the words! They are appreciated. My Doc was also of the opinion that immediate treatment gave me "slightly" better odds of positive results.
The largest area of the mass, which is as wide as my penis and nearer the base, is at least the size of two quarters end to end and then the mass tapers down to the narrowest point maybe, a third of an inch from my head. The Dr described it as kind of like a "shelf" along the top.
The resultant bruising, even with treatment just yesterday morning, has reduced by half.
My general impression was that, Verapamil injections wouldn't negatively affect the condition, worst case scenario. Dr told me he has about a 50% success rate with the injections.
For me personally it was certainly worth a shot. Bad pun intended.
Very interesting that your MD claims a 50% "success" rate. Any sense of how he defines "success"? Over the years I've seen many studies claiming positive results with various treatments but when I look hard at the numbers, I conclude there isn't much there. Small improvements, subjectively reported.
It is, for all intents and purposes, an experimental mode of treatment. Having said that, I didn't hesitate to take my chances with it.
Bob
After reading your post "j", I did some serious recollecting...and he may have very well said "improvement" in 50%...and I just wanted to hear "success." Sorry.
One thing I've learned is that our goal isn't the same as the MDs goal, or the researcher's goal.
For us it's about repair, about being something close to our old selves again. For a researcher it's about a 'statistically significant result' that demonstrates the validity of some underlying theory and justifies the grant money, etc. In other words, a scientific success. If the actual improvement is just 10% on average, that does nothing for the patients and they're disappointed. But for the researcher it's enough - a paper is published, and we start hearing about a 'promising' new therapy.
That would be great if those researchers kept at it and figured out how to get from 10% to 80%. Maybe it's dosage, absorption, time, or some other refinement. But it never happens, because they've gotten all they're going to get out of the study - they published the paper. So we have all these possible therapies - verapamil, ALC, interferon, antifibrotics, colchicine, the rest - that all seem like they might work, but never get past that initial experimental stage. Years go by and they're forgotten.
Bottom line, I keep coming back to AA4500 as the only game in town. But maybe the MDs doing verapamil injections will find out how to make it work better. At least they're trying.
I am willing to endure this process, even for only a 10% improvement. Others have reported greater improvements and I will try. The options are so limited, that I am certainly going to try anything the Dr. recommends or even thinks might not create additional problems. Short of surgery that is. And the surgical option is always looming off in the distance and is something I will certainly try to avoid at any cost. My Dr. also wants to avoid that outcome. He certainly isn't a "knife happy" surgeon. I appreciate that.
Guys, I tried injections little over a month ago, I stopped after 3 injections, after one especially painfully injection. I didn't show any improvement from the injections, in fact I had an extra very small piece of plaque from the needle, however after one year I seemed to have lost that new plaque. Just sharing my expereince. I know the temptation is to do something, but if you do the injections get it done by someone who is very good at it, don't be a guiena pig for some inexperience Doc.
d
Steven
SteveW-
My uro gave the same probability breakdown, as far as the 50/50 split. What is the nature of your bend at this point? You may have covered that already, but I missed it. You said that the plaque starts right at the bass, is your curve more of a progressive angulation from the base to the tip? If that is the case, I think you might be in slightly better shape than I'd initially thought.
In terms of how the bend effects intercourse, I'm guessing that those with a more constant bend, rather than the sharp angular bend that I've got, are better off. I wouldn't imagine it would cause the same problems as the latter.
In terms of options, I would agree with you that avoiding surgery is a big hope for all of us. How realistic it is, is another proposition altogether, and I think your circumstances (age, marital status, whether sex is possible, etc..) factor into the decision.
One other thing that I've noticed from the VI treatment I went through- the area close to the injection points now seems to be permanently discoloured. A couple of shades darker than the other areas of the shaft, and maybe an inch in width and two inches long, as far as the 'staining' appearance. I did have some pretty bad bruising after my first couple of injections, so I could be atypical.
j-
I agree about some of the problems that we deal with as patients, that don't really seem to enter the world of the doctors, in terms of their research or experimental methodology.
When I survey the available treatments, I don't see a whole lot of promise. I don't mean to be a pessimist, cause I know that's not really what any of us need. But I can't speak realistically about my honest perceptions for treatment efficacy without acknowledging to myself that 'in my mind' there is very little to be optimistic about on the treatment front.
From what I've gathered, the best form of treatment, anecdotally, is the VED method...and the irony of that is my urologist doesn't support it as a method, and I don't recall having seen any experiments where the use of a VED was controlled, and demonstrated to have significant effects in a scientific study. So there is a contrast there, in terms of what I'm being told, vs. what my critical judgment perceives based on scientific data. I am going to begin treatment using this method soon, regardless of such conflicts.
To be honest, with the severity of my condition (near 90 degrees sharp bend left around mid-shaft, twisted 90 degress downward), my hope at this point is that IF I don't respond to the next wave of treatments I'm going to throw at the condition over the course of the next year...THEN I hope that finding a very practiced surgeon, combined with a very careful and intensive analysis of the appropriate surgical method, will be a viable solution.
If I could control the Peyronie's, to some degree, for say, the next few years- such that intercourse was possible, and the severity was improved incrementally- then I would hope that there would be a refinement in the surgical process, such that some of the risk was decreased, and the success rate increased.
Something of that is happening in the field of hairloss. At this point, there are a couple of medically proven treatments that have been shown to arrest hairloss. There is also in development, a new surgical procedure involving 'hair cloning' that might be a true solution to the problem- but it is atleast 5 years off.
There are a lot of men that are waiting on the development of that surgical technique/possibility by maintaining a 'holding pattern' with these medications, in the hope that the surgical field will develop in the meantime.
It is even pragmatic for those that are content even with more conventional hair transplants, as they are refining that process at a fast enough rate, that maintaining through the use of medications is seen as a reasonable means of biding time until a more long-term solution presents itself. The idea is "if I could hold out on the surgery by using the medication to slow the process, the surgery itself will be that much better when the medication route loses its effectiveness".
I only wish that there was something similar going on the field of Peyronie's treatment. It doesn't appear as though there is. That's what leaves me in a conundrum as to what path to take, because the surgery doesn't itself seem to be improving as a technique (with the exception of different grafting materials?), and the non-surgical treatments seem to be ineffective, and lacking any direction as a scientific field. I think 'j' outlined some of the problem on that level quite well. It seems hit and miss, and as though after a significant 'miss' there is a 'dark ages' where the treatment atrophies back into the annals of ineffective options...until it's once again re-hashed without any significant leaps in the theory behind its use.
I know this has been one tangent after another- but the above observation as to what has been happening in this field is one reason why I am glad and grateful for what seems to be an increasing level of organization amongst the Peyronies Disease resources. That is one way to put focus on the problem, and to hopefully help to really initiate some form of directed scientific inquiry into treatments and theories as to how to treat this disease. A big thanks to the organizers of this site, as well as the Peyronies Disease coalition in general for unifying in the hopes of moving in that direction.
mezz,
The plaque is wide and flat near the base and continues with an irregular pattern to about the middle of my shaft, then begins to taper to a narrow amount just short of the head. The bend however, is acute. Almost 90 degrees (and still somewhat painful) at roughly the middle of my penis. The "shelf" effect is nothing like the nodules or balls of plaque other men have described. You can literally feel the flat, shelf-like structure of the plaque, how thick it is and actually feel under the plaque along the edges down the length of my penis. In all of the reading I have done, I have encountered no one else who describes their affliction as a wide plate along the top of their shaft, as I have. Guess we are all affected differently.
Steve,
You are not alone. My area of plaque covers the entire top of the shaft starting at the base of the glans and runs down to just above the pubic area. I would describe it as something like an open, somewhat narrow matchbook cover. I have lost about 2'' in length and about 1/3 of girth. The bend is upward about 60 degrees or better.
I went through 12 verapamil injections about 3 years ago. The procedure was identical to that described by Dr. Levine. Each treatment involved deadening, then one puncture was made and the verapamil was placed in the needle track marks. The needle was moved to various locations in the plaque without removing it from the original puncture location.
I had very little bruising or pain after each treatment. Each treatment did leave me with a partial erection for about 45 minutes.
I have no way of knowing if the treatments helped, caused more damage, or did nothing. My condition may have been worse, or better without them. Intercourse is still possible but nowhere near what it was prior to the onset of Peyronies Disease. I have never had any problems with erections, even though the member is now very distorted.
Even after 5 years with Peyronies Disease the area of plaque continues to change. There is no question that the disease affects each man differently. There is simply no rule of thumb that can be applied to Peyronie's.
Larry H
So, yesterday was my second Verapamil injection. No perceived change since first injections. Prior to treatment, the Doc called in another Uro to examine and provide a second opinion. Hell, lets just invite everyone. I appreciated him wanting to make sure his opinion was valid. The second Dr. immediately started discussing the size, the size of the mass, the largest he had ever seen. Gee, thanks. Then, while fondling my unit, he starts discussing surgery, scraping and removing the mass. Hellooooo, I'm in the room. They casually chatted about my condition took turns feeling and discussed how to best proceed, while I laid there with my, stuff hanging out.
They decided to add Verapamil topical to the regime. Just seeking any additional benefit they could provide. According to my Doc, topically is how they originally used the drug. He immediately went into my injections, with the initial six or so to kill the pain. If the actual injections hurt worse than those did, I would have passed out. He said he was going to up the pain killer since I experienced "some" discomfort last session. YEOW!!! Holy, you know what!!! My penis, following the injections and for a while after, was swollen to about twice it's normal girth. That part wasn't so bad (hehe) except by the end of the day, my penis is black and blue from head to base. I think I was feeling some shock. He used the word aggressive. No kidding.
:o Ouch :o I'm supposed to start my injections in about 2 weeks, and I'm not getting a 'warm fuzzy' feeling about it all! Although my plaque isn't near as extensive as your explanation, so maybe my experience won't be quite so traumatic :-\.
I was originally scheduled for injections about 1 1/2 months ago, but was hesitant to have a needle stuck in a very sensitive part! I told the Uro that I wanted to stay on the Topical Verapamil for another couple of months to see how that worked out. Well, All total, I've been on TV for about 11 weeks, and I've been documenting my progress (weekly photos) -- there hasn't been any. Maybe 11 weeks isn't enough time for anything to show up, but all the feedback I've received from other Uros I've contacted over the Net is that Topical really doesn't do anything. So far, from my limited experience, they're right.
So, bottom line is that I've decided to go ahead with the injections, althought a black and blue penis doesn't sound too appealing.
Note to Steve and SteveW:
Guys, what I am about to say is strictly my own opinion formed from my experience with verapamil injections. So, bottom line to begin with is:
DON'T DO IT! If you have read any of my history on this and the other forum you must know that Peyronies Disease has been with me for about 52 years now. It has come and gone about 4 or 5 times in that period of time.
When I say don't do it, I mean just that. I had the "treatment so to speak" of the shots. Each one only gave me more nodules and plaque which it was supposed to clear up. Verapamil was developed for use in heart patients to help during and after heart attacks. It was supposed to "open up" the arteries and/or blood vessels to allow more flow. However, from my own segment of shots, absolutely nothing happened to reduce the symptoms.
It seems that nowadays, uros are giving shots to eliminate the pain of the injection, etc. That in itself only increases the number of chances of getting more nodules and/or other problems. As you know from your shots that you experienced black and blue plus swelling of the entire penis. This should indicate to you that something is wrong! Not trying to be a macho individual, but I took all my injections without pain killers since I realized that more sticks could bring on more nodules. Had tried the Caverject shots for ED which gave me nodules also and this made my decision to drop the verapamil injections for the same reason.
I am relating this experience strictly for your information in order that you might have a better insight of what can and will happen with any invasive sticks of the penile tissue. So armed with this information, decide if they would be right for you. I would not under any circumstance use any needle in my penis knowing what I know now.
Best regards to you both,
Sincerely, Old Man
Black and blue penis notwithstanding, I am going to complete the first round of six injections. No one has offered any alternative. I am hopeful (of course) since my Doctor wanted to start treatment asap, rather than waiting for stabilization. Given that my onset only occurred over the last few weeks, maybe just maybe, the odds are slightly better? The only other alternative seems to be surgery and I am willing to try just about anything to avoid that.
Steve, the pain is brief. And IMHO, isn't a temporarily bruised dick worth, if the injections just might help? IMHO. IMHO. IMHO.
SteveW and Old Man - Thanks for the experience and insite (and suggestions). Like SteveW, my bend came on fairly rapidly, and I've only had Peyronies Disease since about Feb-Mar of this year. My Uro wanted to start the injections a month after I saw him but I put it off for another 2 months. To my un-experienced and layman's opinion, I'd think that starting treatment early might have a better chance of getting positive results. So, Old Man, thank you VERY much for your experienced opinions, but I think that I'm going to give the injections a shot (pun intended).
Note to Steve and SteveW:
Again, as I said, the decision would be yours. However, knowing what I now know about injections into the penile and/or erections areas that would be a sort of last resort for me. After my uro explained what happens when the tissue is injected with "a foreign matter" such as any fluid, the tissue is inflated and it takes time for the tissue to return to normal and heal. The more area that is "inflated" the longer it takes for it to get well so to speak.
Injecting the area with several sticks for pain killer is doing the same thing as the medication. So, IMHO, this causes more trauma to that area and possiby leads to getting more nodules and/or plaque.
So, I respect you guys judgment since it is your penis that you are dealing with and you know what is best for you. Just wanted to lend my background for any help it might provide.
Sincerrely, Old Man
In scanning through Peyronie's internet data I saw an article by the doctor listed below. I cut out one paragraph relating to verapamil injections, because it is rare to read or hear a urologist state what he says in the last sentence. Again we see conflict within urology concerning the benchmark treatment of many urologists short of surgery.
Larry H
by Philip Werthman, M.D.
Dr. Werthman is a board certified urologist, fellowship-trained andrologist and Director of the Center for Male Reproductive Medicine in Century City, Los Angeles. He also serves as Chief of Urology at Century City Hospital, Assistant Clinical Professor of Urology at The University of Southern California School of Medicine.
"The treatments for Peyronie's Disease can be categorized as medical or surgical. Oral medications such as vitamin E (which can also be applied topically), Potaba (http://www.glenwood-llc.com/ppotaba.htm) and colchicine have been studied and beneficial effects have yet to be proven. These medications may be tried during the first 12 month period of plaque stabilization but can be associated with some side effects. Intralesional injections (into the scar) of steroids, collagenase, interferon, and verapamil have been attempted and are also of questionable benefit. Injecting any of these agents into the penis may make the plaque worse."
Larry H:
Thanks for your last post as to at least one uro who thinks that penile injections may lead to further complications.
That has been my personal observation while working with quite a number of prostate cancer and Peyronies Disease patients in my counseling work.
As I said, they are no longer an option for me due to the problems that arose while I was under the injection method. Injections for erections and the verapamil ones gave me more plaque and nodules.
Regards, Old Man
31 from asia.
RECENTLY, i have started to do something about it after gathering
information from the net:
1. i start to take cochicine, and vitamin E.
2. i self made some topical ointment:
actually PLB's verapmil formula is not a sercret, though it is
patent, the content is list in the patent. it is PLO based.
Since i have no channel to buy those ingredient i know from the
patent, say (Fluronic gel 20, etc). i self made the ointment as
below.
a. verapmil pill - ground them into powder
b. dissolve in volka ( with ethanol and water as solvent)
c. lecithin, cod liver oil, flaxseed oil, vit E (lecithin as
penetration enhancer and emulsifier, cod liver oil and flaxseed oil
for their poly un saturated fatty acids, like LA, ALA, OA which are
also penetration enhancer). No DMSO, as i couldn't source them.
d. some vinegar to reduce pH, verapmil has high solubility in ow pH
e. a few drop of lemon and methol essential oil ( limonene and
mehtol as penetrative enhancer too)
I apply the ointment (watery, but dry quickly, probably due to
ethanol evaporation) twice daily. have to shake before use cause the
oil and water base don't mix well.
Not sure of the result. but just try for a week.... hope there is
miracle...
--------------
-comments on ointment formula?
MAny thanks
I am 61 and had Peyronies Disease for almost two years now. It started as sharp pain during erection and before I knew what was happening I got this 40 deg. bend and a plaque the size of a penny. About six months ago I started on TV from PDL. I did not really follow their instructions closely because I used a minimal amount only on the side of the shaft around the plaque. Today, the plaque is almost gone, but I do have what feels like a tough cord along the shaft. The bend is slightly better, but I have a dent where the plaque used to be. The erection is fine up to that point (about 2" below the glands) and rather soft above it. Intercourse is not a problem, but I feel my partner does not get as much pleasure out of it as she should. I have started using VED recently to improve blood flow (as exercise
only). I use Viagra about half the time before sex.
So, what is the conclusion in my case? Possibly the TV has helped, although it may also have been a natural remission. It did not get rid of the bend, or improve the quality of the erection beyond the injury. According to PDL you need to continue treatment for over six months. I am not sure I will. I am also using a DMSO with Vitamin E cream occasionaly. It seems to help softening the shaft and making it more plyable. The bottom line: It is my feeling that the injury cannot be reversed, period (other than surgery, if you are really desperate). The only thing you can do is prevent additional damage and make the most of the situation.
I just got my third shot. The Doc is using "maricaine" to numb because of the compliant of novicaine burning. There is nothing to the shots. From the outset he told me that protocol is to do an ultrasound , but that he rarely finds calcium deposits. He merely wanted pictures of my former pride with its 80 degree upward salute. the shots are $174 per session. Ther first session I could feel( or maybe hear) the needle. It was like puting a pin into a cork and them yanking it out. At seesion number three the needle is able to probe around, with the Uro telling me that the plaque is definitely softening. I get a better quality erection as well. I am more optimistic about this treatment. I aready paid for three months oF Peyronies Disease labs which process was cumbersome and useless. I will report back. Cheers
I'm encouraged to hear your promising results so far. After reading Old Man's and SteveN's very negative experience with the shots, I was getting very nervous about my shots which are to start in about 2 weeks. I too have tried the topical, for 13 weeks now with no result at all according to my weekly photos. I'll be documenting my shots too, so I'll have something to compare to.
Many thanks to you, SteveW, Old Man, and SteveN for your experience and suggestions. That is what this forum is all about.
Steve
A warm welcome to Secondfourth, Adam, and Bentley all new members posting on this thread. Thanks for your participation and your example to others.
Hawk
Quote from: secondfourth on October 11, 2005, 12:12:46 AM
1. i start to take cochicine, and vitamin E.
2. i self made some topical ointment:
actually PLB's verapmil formula is not a sercret, though it is
patent, the content is list in the patent. it is PLO based...................
but just try for a week.... hope there is
miracle...
Secondfourth,
I am sad to report there are few treatment related miracles with Peyronies Disease.
NO treatment I have heard of even begins to give results in one week. Many here have used actual properly formulated topical verapamil for months with no respose. I do think there are things we can do to improve our condition but that they are gradual and uncertain.
I wish you success in being optimistic and persistant. I also hope you keep posting and researching your options.
Hi All,
I am new here so I thought that I would jump right in with a question. I have always thought that the verapamil combined with dmso could deliver the active ingredient right deep into the affected tissue and spare the patient the trauma of an injection. Any thoughts on this?
Thanks
Soxfan,
Yes, I do have a thought, or question. Since you are new, where did you come up with the idea about verapamil, and DMSO as a carrying agent.
Larry H
I recall an early patent application with dmso/verapamil. I have often wondered about this as well. As a matter of fact I posted a question about this to Barry and Rzz in the DMSO thread. Guys interested in this take a look at the dmso thread.
Quote from: Larry H on October 14, 2005, 09:46:14 PM
Soxfan,
Yes, I do have a thought, or question. Since you are new, where did you come up with the idea about verapamil, and DMSO as a carrying agent.
Larry H
Larry,
I ask because I have used dmso with crushed avodart tablets to help regrow my front hairline with great success. I have also used dmso with yohimbine hcl as a great topical fatloss combo, it worked great on my abs/love-handles.
As such, I just thought that using dmso with the verapimil would be very effective and spare the trauma of a needle to the member.
Cheers.
Soxfan,
First let me apologize for my somewhat curt message of last night. I was rushed and didn't take time to explain my thoughts, but your question showed a depth of knowledge not usually seen in first time posters, and it is a subject that I've spent some time on with research.
The bottom line is that there was research studies done on just this several years ago. The DMSO does in fact drive the verapamil into the tissue. However, the problem found was that it drove it in so far that it bypassed the plaque. To put it another way, there was no way to target the plaque. It would seem that adjustment of the concentration of DMSO may improve the effectiveness of this type of treatment, but as in all studies of Peyronie's treatment they seem to be hit or miss and of short duration.
Welcome to the forum, and we look forward to your continued contributions. The type of out of box thinking shown in your question may result in the Peyronies Disease advocate finding better treatments in the future.
My Best,
Larry
Further to Larry's post, I recall a posting on The Other Place:
Verapamil is a calcium channel blocker and is taken orally to reduce blood pressure. If you apply it to the skin with DMSO, you cannot guarantee how far it will penetrate. If it penetrates past the plaque you suddenly have an unregulated amount of a blood pressure reducer running round your system.
As I recall, the advice was that if you are going to do it, do it in the ER where they have the facilities to cope with a catastrophic drop in blood pressure.
Flexor
For the record, injecting Verapamil for Peyronies Disease also causes some of it to reach the bloodstream. I have felt the blood-pressure drop effects of VI myself, though not very strong until the dose was doubled to 20 mg. Don't know whether DSMO delivery would be worse in that respect. My Uro's opinion about DSMO in general is that it is hard to control. You can't prevent whatever agent it delivers from going to the wrong places. Any strong agent it delivers could harm good tissue (including healthy tunica) along with the plaque that you are targetting.
Hi Larry,
Rest assured that I was not in any way offended or put off by your response to my initial message here, it's all good.
There is a wealth of info. on this site and I only hope that I can make a positive contribution.
Cheers.
Flexor is correct, and that's another consideration. When I had my 12 VI treatments I was first hooked to a heart-blood pressure monitor and a nurse assisted the doctor to monitor my blood pressure.
One of my concerns about DMSO used without a doctors supervision as a home treatment is that some may be less than careful about maintaining sterile conditions. DMSO will carry anything it comes in contact with into the tissue and bloodstream, including such things as fabric dyes.
Larry H
Okay guys, I started Iontophoresis treatment with verapamil today. I want to tell you guys about it, as I know I had a bunch of questions as to how it exactly works. I've literally just started today so obviously there aren't any changes or anything to report.
As a little background, my situation is that I essentially have one, perhaps two very small plaques in what is essentially the septum of the penis, midway up the shaft. I say one, "perhaps" two because felt from one angle, there is no separation between the two. If it is one plaque, it is approximately the size of a pea. If it is two, they are both approximately the size of BBs. It is somewhat difficult to tell because they are extremely close together if they are two, and they are literally IN the septum, so I have to squeeze rather hard to feel the plaque down in there. I have a slight curvature at this point. My goal with Ionto is perhaps not even to correct the current deviation, but at least stop any further change or plaque growth. I don't know if this will work, but it is short of injections and more agressive than topical verapamil, so I thought I'd give it a shot.
As for the Ionto, basically you use a "resevoir" that holds the verapamil on the penis. This resevoir is essentially an upside-down funnel. What you do is place this funnel (it's more oblong than round) literally ON the penis. There is a very sticky adhesive on the edge of the lip that serves to attach the resevoir to the penis - you have to stick it on there pretty good to ensure that it is sealed. Then, at the top of the funnel, if you will, is a hole big enough to place a syringe needle in. You basically inject verapamil and dexamethazone (they show you the correct dosage) using a needle into the top of the resevoir, filling it up slowly. (The first time, mine leaked all over the place - it's a bit of a clumsy procedure). Once filled, you then use the Ionto device.
This device is essntially something like a battery. It is about the size of a Walkman, and has two cords, one red, one black, each with jumper-cable-like clamps at the end. You quite literally "ground" the negative charge by attaching it to a different adhesive pad with a node on it, which is stuck somewhere else on your body (in my case my stomach). You then attach the positive charge to the top of the resevoir, and hit the button. Provided the circuit is done correctly (and mine didn't work several times - we had to try a number of things to get it to go), the battery then uses the electric current to drive the medicine into the tissue.
I must say, you can barely feel it. Indeed, it's not like the resevoir of verapamil dries up very much (although it did dry a tiny amount), but you can just only barely feel something like an electric current off of licking a nine-volt, for example, but MUCH less detectable than that. It does not hurt whatsoever. The treatment lasts for approximately 20 minutes, and the device tells you when it is completed. The only really difficult part was removing the resevoir, as it is basically STUCK on the penis with a strong adhesive. I had to be very careful and it left a bit of a ring of irritation. Nevertheless, all things considered, not bad.
The one big thing about this is the cost. It basically costs $1000, and insurance doesn't cover it whatsoever. For me, it was a difficult decision, but I came to the conclusion that a few credit card payments were more amenable than doing nothing, and I wasn't ready for, nor really a candidate yet for, injections. My goal here is to arrest any growth of plaque if possible (and it very well may do nothing), so this seemed like a decent option. In my case the down side is that my plaque is *in* the septum, so it's down there a bit - not on the top of the tunica, for example. However, the hope is that the drug will indeed reach the plaque and have some effect.
I'll of course let you guys know how it goes over time. As I will likely only be doing it 2-3 times a week, I don't expect to see improvement any time soon (again, if at all) as I have 30 treatments to do at home. Nevertheless, if you have questions that I can answer, please let me know.
Best to all.
dcaptain
dcaptain, Thanks for the info! Please keep us up to date with whatever you find out. I too was interested in Iontophoresis, but the $$$ is a very strong factor :-\. I'm probably going to go with the Dr's recommendtion of injections (but old man and others have strong opinions on injections that also weigh heavily on my decision). If the injections are too painful and/or cause additional problems, I'll look more into how I can afford the Ionto equipment.
Again, Thanks for the info.
My income is VERY low. I guarantee is it probably lower than 75% of the people on this forum.
I would spend $1000 on IONTO in a second...
One could always...
Cancel your cable/directv/whatever
Switch to dialup internet if you have cable/dsl.
Dont go out to eat.
Dont go to the movies.
Dont buy DVDs/Video Games/Magazines/whatever!
Dont buy coffee
Pack your own lunch...
I think that this is one thing worth spending money on.
::steps down from soap box::
Steve:
Yes, I do have strong feelings about any invasive needle punctures into the erectile chambers of one's penis. Having been there and done that with verapamil, Caverject and pain killer injections and personally had the plaque/nodules form over and over again, it is not an option for me.
Since the penis is made up what is known as smooth muscle tissue, it will be more likely to have lesions, nodules and other problems with needle punctures than muscles elsewhere on the body. I am not saying the injections are not for some guys, but with my experience personally I do not recommend them for anyone. However, this is just my humble opinion.
Old Man
thisSux,
Well yeah. IF it worked.
I've already blown $2800 on transdermal verapamil; enough said about that. Next time I want to see some proven results before spending significant money. dcaptain, I don't mean to suggest that ionto won't work. No one seems to know, yet.
I'm about half way through my 4th tube of TV from PDL. Yesterday, I missed one of my twice daily treatments. This is my first miss and I am following all of the other rules of how long to rub, spreading over the full circumference, waiting 5 minutes between rubbings and waiting 5 minutes before putting on tight clothes.
The twice daily procedure has gotten quite old after over a hundred days. It would really be difficult to get in two treatments a day if I were not retired.
I think that I am seeing improvement. There is some variation from measurement to measurement, but it appears that my right bend has improved from about 28-30 degrees to about 17-19 degrees. If this improvement is real, it's going to take 9-12 months of treatment or about $3000.
My up bend is more difficult to photograph and measure and does not appear to be improving as much. The right bend was always more of a problem for intercourse as the bend was weaker and sometimes made entry difficult when my erection was not strong. The up bend is a stronger bend. Very difficult to straighten out when erect.
Also, I cannot detect any return of lost girth and length.
My wife tells me that there is a definite improvement in the feel.
Still, I've seen enough to try another 3 tube prescription.
august,
Like you I have a serious upward bend. After about 3 months I too was thinking there was some improvement. I was at about the end of the 8th month when I got totally discouraged and gave up. I think the twice-daily massage by itself probably improves circulation. But I never did see significant change in the bend so I decided to stop spending the money. The stuff is incredibly expensive given the cost of the known ingredients.
I don't want to sound totally discouraging. The urologist who prescribed it insisted it had 'worked' on others. I'm obviously unconvinced but would be happy to be proven wrong.
I would like to ask you guys (especially those who tried the Peyronies Disease Labs potion) what you think about the following thesis:
The plaque can be diminished by one method or another (I have used the a.m. potion for several months, in combination with DMSO cream and I am not sure what did it, but the plaque, which in my case started the size of a penny, is almost completely gone now). Also, the pain I had initially during a strong erection is gone now (together with the strong erection ;-)).
However (and this is big one), there is very little impact on the curve and the loss of girth and length that goes with it.
I can feel, what I described as a "cord" along the shaft, and I assume is fibrosis of the TA, that has not changed.
So, my thesis is that the Verapamil treatment may be helpful in removing the plaque, but I don't see how it can help to fix the damage and get the old schlong back to form? We are talking about the scar tissue reverting back to normal and the fibrosis reversing! I need a little help with the theory here.
Well, I have gone through my second and third Verapamil injections. The second session (two weeks ago) was rough. The Dr was aggressive and my penis was swollen, black and blue and purple from head to base. No pain after the fact. This past Thursday, when asked if I had seen any improvement, I stated and had noticed that the overall mass seemed more mobile and I "thought" that it had actually reduced in one area.
The Dr also stated that there seemed to be more mobility of the plate and said that it might be an encouraging sign. When he started the injections, he claimed that the plaque seemed "less gritty" and he didn't think the mass was as "dense" on one side of my penis. The other side (half) however, he said seemed unchanged.
In three sessions we have gone through 6 of those little bottles of Verapamil. So, I guess he's pumping me full of 2 per session? Anyone else have info? on levels/amounts of drug injected each time? Just curious, since I've ordered the refills and will continue.
Also, he wants me to continue the twice daily topical applications.
I may be out of my mind, or it's just wishful thinking, but I feel encouraged.
adam1951
What I think is: Peyronies Disease is fibrosis initially accompanied by inflammation. The inflammation and the pain go away on their own but the fibrosis remains. I hear a lot about "reduction of plaque" but never anything about reduction of curve.
Verapamil, however applied or injected, is supposed to stimulate your own cells to produce collagenase, which would break up the collagen in the fibrotic tissue. That's about as far as the theory goes; no one seems to know how much verapamil might be required, whether any of the current treatments deliver the verapamil to where it's needed, or whether any significant collagenase actually gets produced.
Iinitially I had a couple of thicker areas of something near the base, and as I used the TV I think they did get smaller. But it made no functional difference, the bend never changed.
Editorial comment: PDL initially made statements about how they were going to gather information from their patients by detailed followups. I think in the first years of distribution they did talk to patients by phone and ask for details - not in my case, however. If they did gather a lot of information in this way, I'd like to know what they did with it. I'd also like to know where all the money is going - they initially said they'd be pursuing FDA approval but I've heard nothing.Their web site hasn't been updated in years. Why don't urologists ask PDL some of these hard questions?
J, I would think those would be appropriate questions for patients to ask. Reality is that this is the largest active assembly of Peyronies Disease patients in existance, and the fastest growing assembly in histroy. I have been vocal about respecting the reality of a profit motive. Profit is not a dirty word. I would think however that a company that claims to have an interest in Peyronies Disease patients in addition to having a profit motive, would take the time to answer those questions. I know they know we are here.
Why aren't they?
Hawk, I doubt that PDL would answer those sorts of questions if a patient just called on the phone.
Of course they have the right to make money and can charge whatever they want. They've tried to enforce a patent on any topical use of Verapamil, and have refused to allow other pharmacies to compound their formula, allowing them to continue charging a very high price to patients, many if not most of whom must pay out-of-pocket. Their website claims FDA approval will be sought, which would tend to justify the high price as a way to raise money for trials; however several years have gone by, and no trials.
My frustration is basically this: I'm not saying TV is a scam. It may have some effect such that if you applied it diligently for many months or years, real improvement would result. But that's out of the question for most of us at current prices, with PDL not "participating" in our insurance plans provider networks. PDL maintains this status quo and won't go forward - by funding FDA trials - or backward - by allowing "in-network" pharmacies to compound it. So what's really going on? And if urologists really want what's best for their patients - couldn't they rock this boat a little, instead of just continuing to prescribe an over-priced medication of dubious value?
From their website FAQ:
"Can my doctor talk to the inventor directly?"
"Yes. Have him/her contact Prescription Dispensing Laboratories, Inc., in San Antonio, Texas."
"j" wrote:
"And if urologists really want what's best for their patients - couldn't they rock this boat a little, instead of just continuing to prescribe an over-priced medication of dubious value"
It is my opinion that many urologists prescribe TV more as a band aid than anything else. They go to the various AUA meetings and conventions with trade shows, visit the booth of one of the two compounding pharmacies, get their data and since it's a non-invasive treatment, prescribe the stuff as a path of least resistance-patient feel good approach. No needles, no upset stomach, no cutting, no physical harm, but from what we read, no real help, at least in most cases. Now I said "no physical harm" because there is some harm, and that's to the patients pocketbook.
If this is the situation I don't think the rank and file urologist will rock the boat. It is going to take, as Hawk suggested, the Peyronies Disease patient, or as I have been saying on the "Awareness" topic, a group of Peyronies Disease patients willing to become activists to rock this and the many other boats that involve Peyronies Disease and it's treatment.
"j" is correct, PDL or anyone else is not going to respond to pointed questions from one patient, but they may to a group that pushing on them. And the more the group pushes the more it becomes known, and the more it becomes respected...things start to get done.
Larry H
Just a quick follow up:
I want to make it clear that I'm not slamming TV, I don't know, I've never used it. It is expensive, and there has been little posted by those who have used it to build much hope. Perhaps the drug will only work for a very few, in that case the few need to be able to get it, and the drug should not be put down.
The point is that the folks who compound and sell it need to respond to some pointed questions, and those questions would be best asked by a structured group of Peyronies Disease patient advocates. That's my opinion.
Larry
Cialis and Viagra cost $10-$12 per tablet. You can buy a generic versions from India for less than $1 if you shop around. At $1, the Indian manufacturer is making money and the middlemen are too. The point is, all drug manufacturers charge what the market will bear to make a profit and pay off their research costs. Why in the world is PDL condemned on this forum for doing the same with TV?
Regarding the question of plaque vs bend. I have two significant bends but never had much plaque. My doc could detect it and even measure it but I was never sure that I could feel it. After one month of TV, my doc could no longer detect any plaque. As for the bends, they appear to be slowly improving with TV treatment. I'll continue as long as the bend is improving.
It has been quite awhile since I have been here. There are a lot of new names here but, sadly, nothing new. I will try to keep this post short and will run the risk of sounding curt. I don't mean to be.
Mezz- to answer your question, no I can not have intercourse.
To those of you commenting that following injections things seem slightly better or slightly worse the reality is that we have all learned that the plaque morphs without any intervention.
To that Urologist who claim "success" or, the ever more nebulous, "improvement" rates of 50% to 80%, you are not telling the truth. Why do they do the injections when everything screams, "they don't work?" For the same reason that we go and get them. We assume it can't hurt and we assume that it is better than doing nothing. To think otherwise is to find ones self without hope.
Bentley, you are suggesting that after a couple of treatments you are seeing improvement. Hold that thought because you are a long way from cured. You also mentioned that you pay $174 per visit. My insurance company was paying for my treatment except I bought the Verapamil. It was dirt-cheap. I paid $7 for a large vile that lasted several months. So why do the Uros continue to do this treatments. I am sure I had close to 100 injections before the light came on. 100x174= $17,400 of easy money. The qualifier of course is "it can't hurt."
I have been reading about people's treatments for over three years and Old Man has been here forever. I'm not sure about OM (I know he has regards for the VED) but not only do I believe VP injections don't work I believe nothing that is consider contemporary treatment is working. I only come here hoping to find something new. But, alas, it is the same old Voodoo medicine. But I do like this board.
KMBW:
While I respect your right to your opinion, I don't agree with you that the VED does not work if that it what you are saying. All along I have repeatedly stated that it does not work for all. I know that it worked for me and many others, some of whom have posted their successes on this and the old forum.
The price you paid for the verapamil would have bought many VEDs. My only thought here is that "nothing ventured, nothing gained". At the time you took them, you were under the impression that verapamil injections would work. However, after many of them you came to the conclusion that they did not work. The same principle would apply to any "treatment or therapy" that one would choose to use. Results vary from these on a case by case basis as no two men will have the exact same symptoms.
I know your frustration with getting some relief or having any success in reducing the symptoms. One just has to keep on trying things until something works or the medical community realizes that Peyronies Disease is not just a minor problem with men and gets research started toward some cure or effective treatment. I encounter men just about every day that have it and are not even willing to talk about it. They just suffer in silence. As you said, this forum allows us a place to vent our frustrations and seek comfort from others.
Just keep the faith and keep on trying things until something comes along that will help. As I have had this mess for so many years, I know very well your feelings. Good luck to you and trust that something good will happen for you soon.
Sincerely, Old Man
Old Man, I don't really take issue with VED use for one simple reason. It seems obvious to me that some changes or atrophy occurs in the portion of the penis that is no longer gets stretched. I would think the VED would be of some help to counteract atrophy. Since this thread is about VP injections I do wish to register my conclusions based on my experience and everything that I read here that VP injections don't work. I think most readers can conclude the same thing yet most of us do it anyway. The thread has also ventured into topical VP for which I draw the same conclusion. While I accept that stretching by way of a VED can offer some benefit, all of the injectable, topical and ingested medicines are a waste of time and money.
kbmw:
You are 100% right about the atrophy. That is one of the worst conditions that an older man can experience. Since as age creeps up on us, the penis gets less and less usage as well as no more nocturnal erections to keep it healthy we do tend to "draw up" in length and girth. Some doctors are now recommending using some form of exercise for the penis in older men. At 76 plus, I have been there and done that! A radical prostatectomy took its toll on the old libido for me! I have used a modified form of jelqing to help with keeping the old tool in tune.
I have never used topical verapamil, but had a round of the injections (6 in all) and each one gave me more nodules that later evolved into plaque. The VED was the only thing that helped straighten it out and get me back to an almost normal condition.
My position on verapamil is up for grabs at the moment, but I am leaning towards the fact that it does nothing for most of us. However, I am sure that it does help some when administered at the right time in their Peyronies Disease.
Regards, Old Man
Old ManQuoteHowever, I am sure that it does help some when administered at the right time in their Peyronies Disease.
Well Old Man, I just don't see one single entry here that supports this. I think Uro's offer VP injections because they have nothing else to offer and it is easy money. I would also add that clinging to the concept "that it may help some" only plays to wishful thinking that encourages people to seek this treatment. I wish that I knew then what I know now about injections. I would never have done it.
I may give the VED a try.
kbmw:
You are probably right on all counts stated in your last post. When and if you decide on the VED therapy and I can help, just let me know. As I have said many times, it does not work for all guys, but it has for at least some.
It seems like that once they have had some good results with the VED, they never bother to come back on the forum to report what happened for them. Just wish that they would so all could learn what does and does not by using the VED.
Good luck to you.
Old Man
Thanks Old Man, and if I do decide to fork over the huge amount of money that they charge I will definitely consult with you. I would think it would be a wiser business choice to sell these VEDs for less and go for volume. I mean it couldn't cost very much to make these things or is there more to them than meets the eye?
You raise an interesting question. What of those who don't come back? I didn't bother to communicate much after I stopped injections. Partly because I have accepted that this is the way life is going to be and the best thing is to do all of the other things available and forget sex. And of course that is not easy. Can't imagine being 20 something and having this crap. I would doubt that there are cured people just not bothering to tell of their good news. If they did find "the fix" I suspect that their stories would be told and retold. I think people leave either because they have just accepted their condition or because they are discouraged. My opinion for why people are here begins with the hopeful search and ends in just wanting to be in touch with others who have suffered the same fate. It is interesting to see an MD posting here who gets no more help or satisfaction than the rest of us. This comment is not specific to VEDs
kbmw and Old Man; not meaning to change the subject, but I was discussing the 'proposed' injections with my Uro last week, and asked specifically about whether or not the injections could cause more plaque formation. He told me that last year, Baylor did a study of just that issue, and came to the conclusion that no-the injections do not cause more plaque.
I'd like to be able to read that report myself, but haven't been able to find any on-line reference to it (although I haven't searched too much yet). Does anyone know of this report and if it's available on-line?
Steve:
Mine might be the exception to the rule and/or study, but had a new nodule for each injection (six) when I was taking the verapamil. In addition, when I had my prostate surgery and tried using the Caverject injections for erections, they also gave me nodules for each "stick".
So, who knows what is or is not the truth about this subject. All I know is that for each injection, I got a nodule and soon they joined together and formed a plaque, etc.
Old Man
Steve, The information that we get on just about any treatment is anecdotal. Even with what is offered as empirical information it seems that statistical variation fall within the range of expected error. Most of the answers you get are simply opinions and you know what they say about opinions. So here is mine.
I simply don't know. I had too many injections and I suspect that it was enough to cause scarring which could be mistaken for nodules. Here is what I am convinced of. The masses we can feel, at least in my case, are always changing. When I started injections the Uro was convinced (and convinced me) that the changes during treatment were a result of injections. Of course that gave me hope. I now believe that was false hope. I think the changes could occur anyway. One thing that never changed is the awful and pronounced bend. As you read through all of the postings regarding injections you will not find one case that was cured. Even if you did it is still anecdotal and could just as easily be explained as spontaneous remission. Spontaneous remission, as unlikely as it is to occur, seems to be much of a possibility of recovery as any ingested, injected or induced treatment discussed here. You didn't ask but based on what you can read here, I would advise against injections. As long as the phrase "it may help some" prefaces any suggested treatment desperation will interpret the phrase to mean that it "does" help some.
On the "Alternative Treatment" thread I am amazed at the amount of wishful thinking that motivates people to engage in some strange treatments. I just can't find the "some" that it may helps. If I were cured I would return regularly to tell everyone and to let them know how. I hate to sound so pessimistic but at this point spontaneous remission seems as likely a cure as any treatment currently available. I do think that The VED can offer some help without risking further damage. At worst it keeps tissue conditioned by counteracting atrophy. And that is just a speculative opinion.
Dr. Fitch has now treated over 2000 patients with TV. He is working on a paper now. Results have been slightly better than the original test results.
Those "original test results" are going to be hard to top. Here's an excerpt from Urology Times regarding the 2002 study:
"Initially, only 20 patients were randomized to verapamil. Of those, 18 completed the study. Dr. Fitch said that all 18 patients had plaque decrease; the average plaque reduction per patient was 86.2%. Pain resolution occurred in 100% of the patients as well, he said.
"Curvature decrease occurred in 94.4% of the patients with an average curve decrease of 60.7%," he said.
Based on my own experience and what I've read on this and other forums over the last couple of years, I can no longer find any of these claims credible. It just doesn't make sense that all the guys who've posted just somehow fell into that 5.4% who had no improvement of curvature.
???Yeah, I've spent the last 15 weeks with TV, twice a day, and my photos show 0 change...I guess I'm one of the unlucky 5% too!
Its working for me.
Now, I'm going to double dose to speed up the process. Four treatments per day vs 2. Cost is same. When doc prescribes 4 per day, monthly price stays same, 60 mg for price of 30.
29 degrees now 18 degrees.
Perhaps if you contacted Dr. Fitch's office, he might put you in contact with some of his 2000 patients.
I'd be satisfied if he'd just put me in touch with some of my 2800 dollars.
But if you feel it's working... I'd be interested in knowing more of your story - how long you've had Peyronies Disease, how rapidly it developed, whether you also have Dupuytren's or Lederhose, etc.
I had my 4th VI last week. It was a rough one. I am certainly willing to post and share the experience...but am reticent to do so. I certainly don't want to discourage or influence ANYONE'S decision about continuing or starting injections. I bow to the wishes of the group.
I for one want to hear both sides of the issue! The information from anyone who's already undergone any kind of treatment is the most valuable of all. Keep the information flowing!
And I for one am biting my tongue here.
My doc's experience with VI ... this was about a year ago ... 12 patients ... 2 better, 2 worse, 8 no change.
Well, here goes. Let the flaming begin.
There "seems" to be some improvement. I can't tell much difference in the overall plaque mass, but the pronounced curvature when erect IS somewhat reduced. Maybe 10-20% less severe than 8 weeks ago.
Last week was injection #4, and it was a really tough, painful one. I am not sure how many individual injections, but my Doc approached the mass from "underneath" injecting from the side of my penis, up into the underside of the mass. For the first time, I actually verbalized the pain...by letting out a few very loud guttural sounds, which I am sure they heard out in the hall. I jumped, squirmed and endured more injections of both lido cane and Verapamil. I was sweating, crying and clenching my fists. The Dr. kept apologizing and trying to say comforting words.
After the treatment, he handed me a swab and told me to lie there applying compression for a few minutes until the bleeding stopped (it didn't, completely) and until I was composed enough to dress and leave. For the rest of the day and most of the next, I felt as though I was in shock, which is the only way I can describe the after effects.
My penis was black, blue and purple for days, and then turned that really attractive yellow color as the bruising went away.
Not really sure this is working, but if all of this actually does at the very least, reduce the severe curvature to the point where I can perform sexually, I will submit. I am going to finish the initial six sessions, analyze the situation and then my Doc and I will discuss where to go from there.
SteveW
Been there, done that. In fact it went on for two years. I was getting two hypodermics once a week at the end. Why did I continue? Because the Dr. kept saying "there seems to be some improvement." That line, IMHO, is fools gold. Plaque is forever changeable.
August posted his Dr. results without any clear statement of what "better" means. Those results are, again IMHO, no better than chance. And if one or two guys did improve they will tell you it was a result of the shot. There is no way in hell to know that. I just don't think there is any good evidence to support VI injections.
Are you by any chance from So. Calif.
Quote from: kbmw on November 12, 2005, 04:12:31 PM
Are you by any chance from So. Calif.
Not in So CA. Albuquerque, New Mexico.
SteveW,
I thought perhaps we shared the same sadistic Urologist.
Maybe they got their training at the same Medical School?
Do Docs get together in the locker room and tell jokes? "You wouldn't believe what I did to this guys penis today"..........................
Special note:
I know quite a few doctors personally, and for the most part they do not relate their mistakes and/or boo boo's to other docs. However, they do at times tell funny stories about weird things that happen in the ORs. One doc friend told me that many things happen during surgery they have no control over and it makes it bad for them.
Old Man
Just finished my 5th tube of TV. Now doing 4 treatments per day.
Right bend was 28.6 degrees before starting TV. Now at 15.3 degrees. I have 5 more tubes in my medicine cabinet.
August
I am really confused and disheartened at the moment.
Injection #6 is tomorrow. Up until a few days ago, I honestly felt that the VI's were helping. The curvature had been reduced in a very positive and visible amount. However, over just the last week (4-5 days) or so, my erect curvature has become just as severe, if not more so than it was originally. There is again some slight pain (discomfort?) when hard, but the overall size of the plaque mass seems unchanged.
My question, if it really is one and not just self pity I guess, is whether or not anyone else has ever experienced such radical changes in their condition in just a matter of a very few days? The original onset was just as sudden and this reversal so rapid that it is amazing.
I had seven sessions of 10 mg at two week intervals. There was a time when I thought I didn't have to worry about Peyronies Disease because I thought I now had ed. It stabilized before the next injection. Also If you cannot leave the pressure wrap on for at least 2 hours after the tenderizing session, it seems to swell in the area and give the sense that the area is much worse. Two weeks after my last I have less of a bend and a smaller and softer plaque. Make no mistake, It did not fix it but it made it better. In two weeks after your last injection you will have a good idea of what's going to be going on. Good Luck
Quote from: august on November 26, 2005, 10:00:26 AM
Just finished my 5th tube of TV. Now doing 4 treatments per day.
Right bend was 28.6 degrees before starting TV. Now at 15.3 degrees. I have 5 more tubes in my medicine cabinet.
August
Hi. I used topical verapamil from Peyronies Disease labs for 6 months religiously twice daily as recommended by Peyronies Disease labs. Were you recommended TV by a uro? Did you start off with 4 applications per day?? How long have you been using TV??
Hey guys, I thought I would update the forum on the progress I've made thus far with Iontophoresis. I unfortunately don't have that much to report, but since I said I would update the board I will...
I started Ionto with Verapamil on 10/20. I've been doing approximatly 2 applications per week over these last 6 weeks or so, so I've had about 12 applications. What's weird is that I have two small plaques, mostly dead center in the septum, one being more off to the right than the other. As they are somewhat deep, the issue of getting the verapamil to them is somewhat more difficult than if the plaques were located on the tunica. The curvature I have is to the left, which means that it's likely that something else is causing this left turn. My doctor concurred that the plaque I do have is not likely causing the curvature.
As such, it's been somewhat difficult to guestimate *where* I should direct the Ionto treatment. In an attempt to be as liberal as possible with it, I've basically moved the location of the Ionto treatment, rotating between a few set spots. I do include those spots that would most likely deliver the drug to the plaque as well, although again it is unlikely that the plaque is causing my current deviation.
The results thus far have not been dramatic. I would say if anything, it has improved my curve only slightly. The plaques I have are still there. However, things are generally more "loose" than they were - the curve doesn't seem as strong, and when flaccid there isn't the tightness that once existed. Whether or not I owe this to the Ionto I cannot say. The only other treatment I've been doing is heating with a heating pad that gets to approximately 100 degrees, infrequently. It theoretically could be getting better naturally too.
I have about 15 more treatments to go with the Ionto, and I plan on asking the urologist for another round of treatment, falling under the "can't hurt" and the "I paid an arm and a leg for this thing so I'm gonna keep using it" arguments at the same time. I will continue to update the board as to how it goes. Unfortunately to date, I just don't have that much to report.
It's been a while since I've posted, so I thought I'd let you guys know where I am...After looking at the co$t of Ionto, I opted to go with VI. I've just had my 4th injection this last week. So far, the injections don't hurt too much (the 3rd was a little rough), and the bruising goes away in a couple of days. I wish I could say the same for my bend. I've started a photo log weekly ever since I was diagnosed and started TV. Compairing my first photo before any treatment, and my latest (which was a day after VI #4), I can see no difference whatsoever! I'm on a 10mg VI once every 2 weeks, and my Uro says that if there is no change, he'll increase to 20mg for 6 injections. I think I'm going to 'rest' about a month after the first 6 VI's are through to see if things settle down on their own.
Thanks dcaptain for the updates on Ionto...I'm still interested in this if it seems to help-I'm still trying to avoid the knife!
Dcaptain,
I have been directed by my Uro to undergo Ionto using a steroid and verapimil. The only problem is I can't find anyone that performs this treatment on a penis. The physical therapy facilities do this on elbows for tendonitis, but not on a penis. Did you buy your Ionto device? If so, where did you get it, and did insurance help pay for it?
Thanks,
Phil,
Good question. My doctor recommended Ionto to me - I'll send you his contact info (sorry, am not used to posting names of docs on the Internet, but if anyone wants his info just send me a message and I'll be happy to share!). For a little background, here's my initial post:
https://www.peyroniesforum.net/index.php?topic=26.msg967#msg967.html
« Reply #66 on: October 20, 2005, 08:20:59 PM »
In my doc's practice, you essentially buy the Ionto device and use it at home after an initial training. Unfortunately, it is not covered by insurance whatsoever, so you basically have to cough up the dough. It's not cheap - almost exactly a grand. I had to think long and hard about it, but I decided it had to be worth trying.
So yes, in this instance, you basically get the device, the Verapamil, and administer it at home. It's somewhat of a cumbersome process, but once you get the hang of it, it gets easier.
I hope that helps - am happy to answer any other questions....
dcaptain
How long does your doctor suggest you follow the iontophoresis treatment (outside estimate) ?
Are these items ever available on ebay? It could be a way to recoupe some of the cost. Maybe if it worked you would want to keep it just in case. If it didn't work, maybe it would be a poor sales pitch.
Good question. The doc said to basically do it 2-3 times per week, through the 30 vials of Verapamil prescribed. So, that's roughly 12 weeks, assuming I did it 2.5 times per week, which would be about right. (I've found that I don't necessarily use the entire vial every time, so I try to save some, to extend the treatment course. However, I also lose some due to spilling, etc - it is not the neatest process.)
EBay: unsure if they are ever available there. Part of the issue is that there are different Ionto/EMDA devices out there and I had no real idea why the particular one he was recommending should be used over another one, so I went with what he told me. If interested - here's a link to the company that manufactures my device:
http://www.physion.com/peyronie_edu/whattreatment.html
That picture is almost exactly what I have. The blue resevoir in the guy's hand is what is used to fill with verapamil. If you click around on that site you will see that they are an Italian company, with an office or affiliate in New Jersey. I would think one could contact them directly. I don't know if you need a prescription for the device or not, however. (Obviously for the medication you do).
Hope that helps. :-\
Last week I completed my 7th VI. The first 3-4 seemed to help and the severe curve (almost 90 degrees) DID reduce by probably 20%. The overall mass size (which originally covered just about the entire top side of my penis) was also reduced. The last 3-4 treatments seem to have had zero impact. No curvature, size or change of shape. My mass is best described as a "plate" which is wider at the base, through the middle and tapering to a narrow section towards the head.
Now the Doc is seriously talking surgery. Not nesbit's, but excising of the plaque. I have commited to 6 more VI sessions before I make the decision.
I know. I know. I just wanted to whine a bit. Would it just be better to live with a bent penis and do the best I can or risk surgery, impotence and an implant? I am able to have sex, but find it just about impossible to reach orgasm. Anyone else find delayed or lack of orgasm a side effect of the fun we are having?
Steve:
I am about at the same place. I got some result, but not enough. I am looking through everything I can find and have narrowed down to two doctors I am going to consult out here on the West coast. I know that nobody is going to do any tinkie shrinking on the bottom side ( Nesbitt). Post any info you find and I will do the same over in the Surgery section
Bentley
Thanks bentley!
I got the "impression" from my Doc, that Nesbitt wasn't an option. Maybe just in my case. I've read about the procedure and I don't think so!
Thanks for the very helpful info. I am going to print the stuff out and share it with my HMO office. I've found some Ion patches on a webside that have a battery built in. Don't know if they would work on anything but an elbow. Iontophoresis seems to be one of our better treatments if one can find a place to do it!!! My regular Uro didn't know anything about Ion, only the specialist I was referred to when I asked for a second opinion. D, please keep us informed on your progress. Ion may offer some of us real hope.
SteveW,
Did you experience the difficult orgasm after the injections? The injections could be the cause, I experienced some loss of sensitivity after injections 2 years back, but no loss of orgasm however, but loss of sensitivity on one side of penis, I was never sure if it was injections or Peyronies Disease...but it did occur right at the tie of injections, I told Doc,of course he said no connection between injections and loss of sensitivity, I stopped after that injection (my 3rd) whcih was very painful and ahd subsequent loss of sensitivity (some loss) not all.
Steven
Bentley and SteveW,
What you experienced is normal. I had the same experience. I am convinced that VI injections are Voodoo medicine yet it persists. Please don't think this harsh but you read about peoples failed experiences with VI but chose to do it anyway. Why, because a Doctor gave you reason to believe differently. I did the same thing. Now a Doctor is giving you another recommendation that requires a much more severe course of action. Please proceed with a great deal of caution. You cannot undo the danage done by surgical intervention.
One last thought. If any of you guys here are able to have a reasonable go at intercourse then leave it alone. Be glad for what you have. When you totally loose the ability to have sex because of a radical curve it is very depressing.
I agree with kbmw. Based on what I've read over the last couple of years, I wouldn't go for verapamil injections. And surgery is risky, regardless of what a surgeon tells you. I'm going to hang on to the functionality I have, such as it is, and wait for a better treatment option.
Others may reach different conclusions, which is to be expected given the poor state of understanding of this condition in the medical community. I might be wrong, or you might be wrong, or my doctor might be wrong, or your doctor might be wrong. Or all of the above.
j,
Well that pretty much sums it up. Nobody seems to know nuthin'.
My "difficulty" or lack of ability to orgasm I think, is directly related to my Peyronies Disease. There has just been a complete loss of sensitivity. Not trying to be too graphic, but guys, if I can't "get off" with my own fist, what hope is there?
steveW, Does Peyronies Disease cause lack of sensitivity? or do you think it was the injections that caused it?
Steven
QuoteAugust
Hi. I used topical verapamil from Peyronies Disease labs for 6 months religiously twice daily as recommended by Peyronies Disease labs. Were you recommended TV by a uro? Did you start off with 4 applications per day?? How long have you been using TV??
Before I developed Peyronies Disease, I developed ED from prostate cancer treatment (radiation). The ED specialist that I was using just happened to be the guy who did the TV test work for PDL.
I started with 2 applications per day for 4 months and then went to 4 applications per day. Wish that he had started me on the 4 because the cost of the TV is based on a per month cost instead of a per tube cost.
Measuring the bend is not an exact science. It depends on the strength of the erection and lining up the camera properly. Having two bends, they interfere with each other, so I might find improvement with one measurement and deterioration with the next. Overall though, I am seeing an improvement. Plotting it out, it looks like about 2 degrees per month with a lot of ups and downs along the way. My wife is more sure of the improvement than I am.
Increasing the treatments from 2 to 4 per day has not changed the rate of change with time as far as I can see with my plot. Perhaps, the improvement slows down as the treatment progresses. Who knows?
The specialist you're referring to would be - Fitch?
August, How/why would radiation for prostate cancer cause Peyronies Disease?
Steven
There is a higher than average number of men who have had prostate cancer treatment with Peyronies Disease. Also men with diabetes. In my opinion, this is because of the frequency of ED among these men. Having sexual intercourse with a weak erection causes bending of the penis and scarring.
Quote from: steven on December 29, 2005, 02:17:01 AM
steveW, Does Peyronies Disease cause lack of sensitivity? or do you think it was the injections that caused it?
Steven
I'm not sure. Because I started VI's so soon after diagnosis, I can't separate the two as far as their individual or unrelated effects. The loss of feeling seems to have progressed with the injections however. Or is it just a result of the Peyronies Disease? Every question or action or result, causes more unanswered questions.
Quote from: august on December 30, 2005, 08:40:52 PM
There is a higher than average number of men who have had prostate cancer treatment with Peyronies Disease. Also men with diabetes.
august, I'm curious about your statement correlating diabetes with Peyronies Disease. Do you know of any on-line papers that make this connection? I was diagnosed with diabetes about 4 years ago, and Peyronies Disease almost a year, so I've got a lot of interest!
Steve, I know your question wasn't to me, but I recently saw a paper on a correlation between Peyronies Disease and diabetes and thought I'd share. An abstract can be found online at:
http://tinyurl.com/cwa3a
Hope that's helpful.
dcaptain
Found one more:
http://tinyurl.com/85lej
dcaptain
Quote from: Steve on January 02, 2006, 10:23:15 AM
Quote from: august on December 30, 2005, 08:40:52 PM
There is a higher than average number of men who have had prostate cancer treatment with Peyronies Disease. Also men with diabetes.
august, I'm curious about your statement correlating diabetes with Peyronies Disease. Do you know of any on-line papers that make this connection? I was diagnosed with diabetes about 4 years ago, and Peyronies Disease almost a year, so I've got a lot of interest!
My doctor has treated over 2000 men with Peyronies Disease. I asked him if he thought that the incidence of men with Peyronies Disease is higher than reported. And he said no, but that the incidence in San Antonio was higher because of the higher incidence of diabetes. No report cited.
August,
Several questions come to mind in reading your post. 1) What is the actual percentage reported that you were discussing? Does San Antonio have a higher than normal national average for diabetes? Since you are in San Antonio is Dr. Fitch your uro? I ask about Dr. Fitch because I have looked into Peyronies Disease uros for a family member that lives in the San Antonio area, and Dr. Fitch's name was the one mentioned most often.
Thanks,
Larry
Quote from: Larry H on January 17, 2006, 04:19:05 PM
August,
Several questions come to mind in reading your post. 1) What is the actual percentage reported that you were discussing? Does San Antonio have a higher than normal national average for diabetes? Since you are in San Antonio is Dr. Fitch your uro? I ask about Dr. Fitch because I have looked into Peyronies Disease uros for a family member that lives in the San Antonio area, and Dr. Fitch's name was the one mentioned most often.
Thanks,
Larry
It was just a quick conversation as I was leaving. I think I threw out the number 1 percent, thinking that would be low.
Yes, Fitch is my doctor. He was my ED doctor before Peyronies Disease.
Fitch indicated that diabetes was high in San Antonio. He didn't say why. Could be age related since San Antonio is something of a military retirement center. Could be the rich diet.
August,
Thanks for the info. It's strange about the % of diabetes in SA, but as you say it could be the age factor. San Antonio is a great place to retire.
I guess I would have to take issue with Dr. Fitch on the question of incidence, but with this disease who really knows. We all continue to search.
My Best,
Larry
Well, a slightly self centered change of recent subject matter here. After 9 VI's, I have halted the injections with my Dr's agreement. At the beginning, there was some improvement. The huge plaque mass changed slightly, but the curve did improve by about 25%, from what was originally a 90 degree bend. The last 5 injections did little, if anything. Topical combined with injections was certainly not a "cure." My doc laid out what few options I seem to have. Surgery. He is certainly not encouraging or even positive about the proceedure. Basically, there seems to be a less than 33% chance of coming out of surgery not seriously affected or with an implant. Odds are poor. The Peyronies Disease patients he has referred to other specialists for surgery, or has performed himself, for the most part are unhappy with the outcome. So, I guess I'm in the "learn to live with it" category at the present.
Thanks for being there men. Thanks for letting me vent. And thanks for no "I told you so" comments. hehe.
At the moment, I am doing nothing. Surgery I feel, is not an option.
Whine, whine. Poor pitiful me.
SteveW:
Do not despair my friend. Just because the injections and the other things you have tried did not seemingly work, wait a while to see if you have a delayed reaction to them. I had a similar experience, but after waiting for several months, I did seem some good resullts. No total cure, just some regression of the symptoms.
I have always said that surgery in any form is the last resort. However, if after you have expended all other options, the penile implant does have merit. Have worked with some guys similar to your case and they did have implant surgery after exhausting all other treatments. All have reported great success with the higher medical quality implants. There are several on the market that are considered to be safe for use.
The only one guy I know of that had a bad experience went for the maleable rod type and he replaced it with the inflatable pump type with a tank in this abdomen for the fluid, etc. Won't specify the exact model as I am not sure of its name.
This is just my opinion based on observations of guys that I have worked with in my counseling work the US TOO cancer support group in my hometown.
It carries the same caveat that I am not a qualified medical technician or a medical doctor. Just a guy who has dealt with this mess for over 50 years.
Sincerely, Old Man
Steve W
This is Hopeful.. have Peyronies Disease now for about 6-months... have been to several doctors including a urologist and (2) what I call Scam docs.. that do nothing but prescribe drugs for ED suffers....and take your money. However, I did learn about IONTOPHORESIS from one of them and about a companay www.physion.com that claims to be having good success with early Peyronies Disease patients.. no 100% cure but in some cases as much as 50%.. which for me with a 35% curve upward at the tip--- ( have not had sex in 6-months as it is almost impossible to penetrate.. plus I feel like a freak in front of my wife) married 37 years.. just killing me and her...
Whatever...no more pity.. I am curious what doctor you used for the Injections.. was it Levine in Chicago?? and did he advise you of the Physion company??? I called his office to try and speak to him.. and his assistant said the only way he will talk to me is with an appointment - just only 1600 miles away or with a telephone consultation for $165.00- Can you imagine the gall and the balls.. I told her before I consent to a tel. consultation that I will submit my own questionaire for the doc to fill out.. including questions such as .. what type of modalities does he prescribe, how many yearas has he specialized in Peyronies Disease, how many patienst has he treated., what is his success rate for his various modalities etc.. tighht now I am not under doctors care as I don't think any of them no jack sh_t about Peyronies Disease... I wil continue to search...
I am currently on Vit E and other enzymes.. and am exploring other options including a liquid enzyme that can be applied topically ( and am researching if it can be done via IONTOPHORESIS as well as with a needless syringe -no pain-no swelling etc..) the company has had great success in treating lymphodema - not Peyronies Disease but same similar wound healing process where fibrin is sent to the injured area... Introduced them to Peyronies Disease (knew nothing about the disease) and they are preparing a special formula - working togther with me...to do a small clinical trial.. I am attempting to contact UR's that are open to alternative and can think out of the box.. that would be willing to conduct the trial.. will keep everyone posted
How long have you had Peyronies Disease?? and what other protocols have you tried??
Hopeful
Quote from: SteveW on January 26, 2006, 11:08:43 PM
Well, a slightly self centered change of recent subject matter here. After 9 VI's, I have halted the injections with my Dr's agreement. At the beginning, there was some improvement. The huge plaque mass changed slightly, but the curve did improve by about 25%, from what was originally a 90 degree bend. The last 5 injections did little, if anything. Topical combined with injections was certainly not a "cure." My doc laid out what few options I seem to have. Surgery. He is certainly not encouraging or even positive about the proceedure. Basically, there seems to be a less than 33% chance of coming out of surgery not seriously affected or with an implant. Odds are poor. The Peyronies Disease patients he has referred to other specialists for surgery, or has performed himself, for the most part are unhappy with the outcome. So, I guess I'm in the "learn to live with it" category at the present.
Thanks for being there men. Thanks for letting me vent. And thanks for no "I told you so" comments. hehe.
At the moment, I am doing nothing. Surgery I feel, is not an option.
Whine, whine. Poor pitiful me.
Phil,
Have you started IONTO? yet... if so , what doctor prescribed it? was it from Physion? I am looking into this.. as well as some other alternative treatments..
Hopeful...
Quote from: phil on December 14, 2005, 11:41:34 PM
I have had Peyronies Disease for about a year and a half, and developed a curvature this past June. I just went to see a Peyronies Disease specialist who told me the best treatment method right now is iontophoresis using a steriodal cream and/or verapimil. The tough part is finding a place that does this treatment. Usually it is a physical therapy facility.
Hopeful,
No luck yet finding anyone that can or will do Ionto for Peyronies Disease. Elbow, shoulder, etc yes, but not for the penis. I am still working things out with my HMO and trying to find a physical therapist that does this. I may have to buy a machine myself. Right now I'm still using infrared heat and ALC, E, and aspirin.
On another note, I hear there is a urological convention in Atlanta in April and Peyronies Disease is one of the topics going to be discussed. I hope some good news comes out of the meeting.
Phil
My doc neither mentioned "ionto" or offered other treatments beyond the VI and topical I/we have been using the past 6 months or so. At our last meeting, when treatment was mutually discontinued, the only option seemed to be surgery, which he almost vigorously discouraged. He is meeting with several other doc's at a meeting/retreat/something mid Feb. and has promised to discuss my case with what he referred to as "heavy hitters."
He has called in two other Dr's for consult/exam and all agree I have the most severe case of Peyronies Disease they have encountered. After all the treatment (9 VI's & topical) there has only been slight improvement. The existing plate still covers virtually the entire top side of my penis, shaped like an arrow head from base to head and has been best described as a "flat plate" of solid plaque.
My curve, which was at onset 90 degrees is now maybe reduced to 65 or 70 degrees, seems stable.
HOWEVER...over the last 4-5 days, each erection has become somewhat painful. A pain centered in the mid section of my penis. As or more painful than at onset. Where to from here? Call the doc? Or just endure and fondly remember how my equipment used to perform?
Yeah, I asked my Uro about Ionto, and he just gave me a blank stare! I did locate Dr Levine in Chicago (a bit far for me to commute from Texas), and I'd suggest anyone $eriou$ly considering Ionto to contact him ($$ because you're out-of-pocket for the equipment to the order of 1K or so).
Hey folks,
Came across this eBay listing as I was looking through one of my customers
eBay shops ... its called
Eliminate Scars, Stretch Marks, Burns, Bruises, keloids
The best All Natural solution PROVEN for scars & wounds
Of course after seeing this I had to check it out....
Im wondering if any of you guys have heard of anything similar before ?
Do you think this product would help with Peyronies Disease ? If so why ?
Also would it be dangerous to apply on the penis ?
Heres the link :
http://cgi.ebay.co.uk/ws/eBayISAPI.dll?ViewItem&category=29618&item=5651407338
Ive sent an email asking for the full list of ingriedients to check up.
Cheers !
Ok recieved the reply on the ingriedient list :
No More Scars contains:
helichrysum angustifolium, Anacardium Occidentale, aloe vera, Corylus avellana, Alpha tocopherol, Rosa rubiginosa, phylloquinone, Salvia officinalis... and our secret ingredient!
Anyone know much about these ingriedients ?
Anyways off to research up on each of the above,
Cheers !
Phil,
I spoke to Physion- they wil sel lthe unit and instruct you how to use yourself- I havenot ordered it yet... please read my post below that I sent to susan- also, give tis info to your doctor so he can give it to his HEAVY HITTERS- mas it is time for them to think outside the box- I am available anytime to discuss a possible trial etc...with doctors who will monitor it- how bad is yours-
Susan,
How is the VEd helping your husband... is he able to maintain an erection? what about the Peyronies Disease?, where is his curve?- how long has he had it?....What about the Verapimil injections- who did these- and what was the outcome?- DId he consider IONTOPHORESIS?- www.physion.com ?- I was considering- but have not seen enough evidence- if itwas really working it would be ALl over the forum. I have not purchased a VED yet..
I have had Peyronies Disease for abut 8 months- no more pain- have low testosterone - 300 - have 35% curve at tip of penis- I think it is getting worse..I am only taking oral enzymes for now - . I am working with (3) other companies doing research- one is a company that does high frequency ultra sound- which they are curing prostrate cancer- 100%- and laproscopy- ablation- to remove tumors- see link http://www.misonix.com/medical/US/dApplications -
After speaking to them about Peyronies Disease, they feel that their ablation method may be a modality to try- and they are in the process as we speak- to get approval in London to test this on a cadaver with Peyronies Disease- basically they are able to dissolve cancerous tumors, and suck them out-very similar to liposuction...
I am also working with another company- that has invented a needles syringe- no pain- no bruising-no bleeding - that has just finished a 2,000 patient trial on men with ED and diabetic that cannot take oral Viagra, Cealsis etc- with fantastic results- I am also working with another company that has created a super strong Enzyme creme- that has had fantastic results with DP & lymphodema - both similar to Peyronies Disease - same basic conditions in different parts of the body- I just got the creme- 2 days ago- and started applying it- I will also begin an oral enzyme protocol as well- I want to find a doctor to work with that can monitor the treatment ( before and after) I will be sending sample to the company with the needless syringe to see if this can be administered this way as well- I am also trying to see if it can be administered via IONTOPHORESIS too.
Still trying- still Hopeful- very hard on my wife- no sex- for almost 8 months-very difficult to penetrate- very embarrassing-afraid to try- am 58
Plus a little in it for the money- wanted $165 just to talk on the phone- I think from now on- I wil prepare a written questionaire and send to these doctors to fil out and return beforer making an appointment- I have spent so far over $1500 - just in one visit- for tests only- plus he wanted another- $1500 plus for IONTO and SOMA....
Hopeful,
Thanks for the info. I am very close to getting my HMO to approve ionto treatment.
Phil
Coupla' posts missing, but I'll try to just give the headline news version.
Went through 9 VI's, stopped at end of January, 06. Since that time there has been slight improvement. Bend and overall mass size seem (at least to me) somewhat improved. Scheduled an appointment with Dr Pain for the 14th. He did the "drop 'em and lets take a look" and wasn't as impressed as I was. My doc has been consulting with other dr's and attended a casual get together of other uro's from all over the country as well as two Swiss dr's. The general consensus? Verapamil doesn't work. Any improvement I have had, in his opinion may very well be natural. Much to his dismay, the other doc's are all talking vacuum pump therapy. He is currently doing some more checking and very well may prescribe/recommend a pump. But wants me to continue using the Verapamil topical...since I've already got it and it "couldn't hurt." Doc isn't convinced on the pump therapy, but is willing to entertain the idea and give it a shot. Apparently, this change in therapy has been driven from the patient up with better results in some cases than VI provided.
OM, this is where you say "I told you so." ;)
He also will not recommend surgery for at least another year and may not then if I am able to get and maintain my erection. Even if it is with Cialis. He's a surgeon and realllllllly hates the idea of this operation and also said, he would ship my happy ass to Seattle should the surgery become our absolute last resort. Good bent dick Dr. in Seattle?
SteveW:
No, I would never tell anyone that I told you so. VED therapy has been around for quite a while, but the more popular drs. around the country are usually afraid to try something "new". If they did not think of it first, they usually don't want to try it.
And, again I will say that VED therapy does not work for everyone. I have now come to the conclusion that the VED therapy works best when the Peyronies Disease is caught at just the right stage. In my case, I caught it as it was just beginning (for the fourth or fifth time since age 24) after my prostate cancer surgery.
The uro who did my prostate surgery and I thought that it returned because during the operation, they place some sort of clamp on the penis to hold it out of the way. In the process it can be injured and can cause Peyronies Disease to form. If the patient has had Peyronies Disease before like me, the Peyronies Disease only takes a very slight injury to start up again. No clinical proof of this, but I know that it happened to me.
The VED therapy with the Osbon Esteem VED did eliminate my bend/curve and hourglass effect. I continue to use the VED at least on a weekly if not more basis just for maintenance of the penile health, etc.
Regards, Old Man
My Dear OM,
I was joking with ya'. :) I just found it interesting that my Doc brought up the vacuum pump subject and that this group of "heavy hitters" (his words) he had been discussing my penis with, were getting serious about exploring VED. He virtually refused to restart injections.
SteveW:
I knew you were joking, but just wanted to bring out the point again that some doctors still refuse to accept the fact that the VED can and will help some Peyronies Disease patients. Know first hand, the things that the docs have told me over the past 50 odd years. They tried just about everything they could think of to help, but none worked until the VED therapy.
Anyway, thanks for the support you are lending the forum by stating what the docs you are connected with are saying now.
Regards, Old Man
Hello boys,
I hope I am not invading a "boy's only" discussion but your home page invites partners, also. My husband was diagnosed with Peyronies Disease yesterday. We were both shocked after reading the summary of the disease the urologist gave us. I have just begun research for our options. I am very concerned for my husband and want to help him as much as possible. I have found your forum to be quite informative. My husband is 53 and discovered his lumps no more than 2 weeks ago. The uro says he must have had this for years to be this far along. Both Vic and I are puzzled about that comment as I think we would have noticed something happening. From your postings, I understand this can happen quickly. The uro did not recommend the topical Verapamil since Vic's case is so advanced. Compared to the descriptions you have offered of your own situations, his does not seem to be to that extent. The uro advised us to watch for any changes in the next 3 months. What happens then is still a mystery to us. We took a couple photos to document. He has some moderate-sized nodules but no curvature. Vic states he can tell his erection is less full toward the head of his penis. We are nervous about the prognosis of this disease. I would appreciate any advice at this point.
I just found the female side of this site, so I apologize for mis-using the forum. I am not only a newbie with Peyronies Disease, but with this method of communication. This is a time of discovery in many areas for me.
Hi VJS, I haven't been here for a few months but I am an old hand at this. I know I speak for everyone to say you are welcome to be here.
First I don't think the Uro that you are using knows much about Peyronies Disease. This stuff has sudden onset with sometimes radical symptoms. That was my experience. You did not mention what the symptoms are that your husband is experiencing so I will make some general comments. One, get another uro. Two, if there is pain, wait. It is likely to go away. Three if there is a bend that that is minor and doesn't interfere with intercourse, consider yourself lucky and just live with it. Finally, once you get recommendations from the Doctor(s) for treatment, reread everything here and make an informed decision. This thread contains more information than most Doctors have.
Good luck.
Thank you so much kbmw. I'll let my husband add the details of his symptoms if he wishes. The support this site and it's contributors have offered to us is so much more than the copied info sheet we got yesterday. Is there a list of recommended urologists?
Yes, there are Urologist that have achieved some status on this site. But keep in mind that if you are contemplating surgery the recommendations you find here could be important. Beyond that even the best Urologist are still stuck in the same old treatments that have not been effective. It is my opinion alone that they exaggerate their "success" cases. There are big bucks in providing the conventional and ineffective treatment that they pedal. I am sorry to be sound so cynical but the evidence tells me that spontaneous remission is about the only hope and that is a slim one.
Best Regards'
kbmw
vjs,
Welcome to both you and your husband. Please encourage him to get involved here personally. I have found a great deal of support and comfort just discussing "our" affliction with others who understand and can share. Regardless of our individual outcomes, prognosis or problems, others here have been through it and are willing to offer support and advice based on experience. I find it invaluable. All my best to you both. He is a lucky man to have you in his life. SteveW
Well, Iv'e been mostly involved in posting in the VED section. Thought I would post here since I have started TV recently for Hourglass effect. Working on 2nd tube now. Was told 4 apps a day. Averaging 3 so far. PDLABS told me normally 2 a day is recommended. Tried like hell to get my insurance to pay for some, but no luck. In addition to the TV, I just started on the infrared lamp therapy ie. Joshua's post. Also corresponding with Old Man about VED therapy. Have been bidding on a couple on Ebay with no luck. May consider Angus homemade solution. Anyway, condition started immediately after a loud pop last December. Within a few days a 3/4" plaque developed at the base, creating the hourglass. Pain has subsided since starting TV, but nothing else to note. Will keep posting since this is some "Expensive stuff". Does cause itching. Zig
When I tried TV year a go, it was 2 applications a day. I see they've upped the recommendation. And when I talked with them on the phone, they were still claiming 60% success (down from the original 90%). What are they claiming today?
I hope the $2800 I blew on this stuff went into further research.
roadblock,
It's been a couple of months since you last reported on your Iontophoresis results...anything new to report?
Steve
Phil- did you start- if so- who was your doctor?- and how is it working?
Hopeful
Thanks for the info. I am very close to getting my HMO to approve ionto treatment.
Phil
[/quote]
I am new here, but will jump right in.
I am a 51 year old physician with Peyronies Disease. I have had it since I was 21 years old, and no, it did not seem to be associated with penile trauma - it just happened. I went to a urologist, and he man-handled me and finally announced that I would "probably" be able to have intercourse, if I "used Vasoline", and ordered me POTABA. I took home a huge bottle of the stuff and gagged on it for about a month but finally quit it, as my reading and experiences suggested it would not help. I never went back to a doctor about it.
I have been lucky (in some ways) compared to many stories I have read here. The curvature seemed to not progress too fast, and seemed to be kept at bay by fairly frequent sexual intercourse. When I was without partners in life, I took matters into my own hands.
Over the past 8 years, my erectile function has declined. The "plaque" is a diffuse problem, with a central cord running along the dorsum of my penis, and with a tightening of the circumference near the tip. I thus have an about 45 degree upward curvature, with a distal narrowing. It is increasingly painful and difficult to get hard. The strain of making myself hard with my partner leads to premature orgasm - though viagra has helped a lot with my confidence in that realm.
Recently, the curve worsened, the distal plaque seemed to tighten, and a new nodule formed on the left base, so that I lean that way now. It seemed my way of dealing with this over the years was no longer adequate, so I got back to work reading on what was new.
Note: I was simply using Vitamin E at about 2000 IU when it felt like the Peyronies Disease was active. Additionally, I would take an anti-inflammatory drug (Advil), and would work on "relaxing" things with hot baths and some tugging to apply a stretch. My goal was to "hang loose" for that *felt* exactly the opposite of the uptight feeling I have when it is active. For *me*, I can always tell when it is active, and activity has always been associated with a small incremental worsening of the problem. As I say, it seemed this approach was working for years, though I was never happy with the gradual changes, both physically and emotionally.
My reading suggests that topical verapamil is not likely to work, but that injections *may* work, and that iontophoresis *may* work a bit better than injections. Nothing works very well it seems. Additionally, it seems that the use of oral acetyl-L-carnitine may also contribute to a reduction in disease.
Like most guys, I don't like to read the urologists' caveats, like "longer lasting disease is less likely to respond to therapy", or "some patients worsened".
I am now on a routine daily dose of vitamins, with a heavy emphasis on anti-oxidant therapy, and taking 2-3 grams of carnitine a day (four weeks now). Additionally, I am starting the physion iontophoresis therapy with decadron and verapamil, using their cups (there are other dispensing electrodes available that are better and more flexible, but I decided to start with what is known)(one week now). I am trying to use an NSAID (Advil) at a pretty good dose.
The new left sided lesion at the base is smaller - not yet gone but obviously better. The rest is yet unchanged. Erections come easier, and are less painful (not yet pain free). The best data on Peyronies Disease are now coming out of Italy, and I will post a small bibliography if you want to read, and a good review. I will keep you posted (s).
Tim
Cavallini G, Biagiotti G, Koverech A, et al. Oral propionyl-l-carnitine and intraplaque verapamil in the therapy of advanced and resistant Peyronie's disease. BJU Int. 2002;89:895-900.
Biagiotti G, Cavallini G. Acetyl-L-carnitine vs tamoxifen in the oral therapy of Peyronie's disease: a preliminary report. BJU Int. 2001;88:63-67.
Di Stasi SM. Giannantoni A. Capelli G. Jannini EA. Virgili G. Storti L. Vespasiani G. Transdermal electromotive administration of verapamil and dexamethasone for Peyronie's disease. BJU International. 91(9):825-9, 2003 Jun.
Tim, I think that 's a good summary of where things stand and it agrees with my own conclusions. TV, potaba, colchicine, vitamin E - have no value. Verapamil is something that seems to work in a petri dish, but has little effect in the real world. You'lve probably read about Dr. Tom Lue and pentox - a possibility. Regarding iontophoresis, check this link (see second paragraph from bottom) for results of a very interesting study:
http://www.peyroniesassoc.org/2005_smsna_fall_meeting_sessions.htm
And there's AA4500, a drug under development (maybe) by Auxilium. It's an injectable form of clostridial collagenase - it might work, but it's been stalled in the FDA trial process for years. Maybe as an MD you have some way of finding out what's really going on.
Typical literature on Peyronie's describes a localized lump of "plaque" and the analogy has been used of taping a coin to a balloon, then inflating it. Your case, as well as mine and many others, doesn't fit that description - instead we have a longitudinal band of fibrotic tissue that causes a curve rather than a sharp bend. So I suspect localized treatments like injections of verapamil (or collagenase if it becomes available) may not be a complete solution and I'm wondering abuot systemic antifibrotic drugs. Note that I'm not a physician and all of this is just my opinion base on what's on the web.
Actyl L-Carnitine is interesting. I've seen the summary of that Italian study but it seemed to me that the actual claimed improvement was pretty minimal.
Hi Tim,
I too am a physician and have also gone through a gamut of tx's. Like J's post I tried topical verapamil within a month and a half of my initial erectile pain and only a slight curve........absolutely NO improvement. The disease progressed despite the TV. I wish you the best with the iontopheresis. I e-mailed one of the "senior" vp's about auxilium and as the previous post states, work is being stalled......again welcome to the forum........totheleft
The review by Martin and Mulhall suggested that topically applied verapamil would not work, as it was not found in the tunica after application. Of course, that does not mean that it never got far enough in to anyone to work, ever. But it seems to be less likely to work based on that.
A very good review of the science and the possible mechanisms by which one could affect a plaque lesion is written by Cavallini:
Cavallini G. Towards an evidence-based understanding of Peyronie's disease. [78 refs] International Journal of STD & AIDS. 16(3):187-94; 2005 Mar.
This article has a great table that shows different mechanisms of treatment and the drugs that might work. If folks cannot find a copy of this online, I could mail them a pdf file (or might there be a place to store my copy of it here?).
I am interested in some of the other mechanisms of action for ROS scavengers or anti-inflammatory therapies.
1) Not sure I understand the differences between propionyl and acetyl carnitine (in terms of why the combination is better than just one).
2 Wogonin is a component of an herbal remedy that suppresses cell proliferation and the activation of monocyte chemo-attractant protein 1 (MCP-1) in vitro. I am learning more about it - but it is hard to find in Pittsburgh!
It would be nice to fight this disease on different fronts - perhaps promoting apoptosis, reducing activity of chemoattractants, fibrolysis, anti-oxidant activity, and so that is what I am trying to do, to sort of hit is on all fronts.
Of course, a little knowledge can be a dangerous thing. For instance, testosterone may help.. but testerone receptors are found in abundance on Dupeytrens contracture cells, and seems to activate 'em. This is tha main reason I like the EMDA form of verapamil - it goes where the action is, and for me, it seems like it *could* work since the lesion is pretty close to the dorsum of my penis. No side effects so far.
Tim
tim468, totheleft - do either of you also have any of the other 'superficial fibromatoses' - Dupuytren's Lederhose, Garrod's knuckles, frozen shoulder? I have all, and many posters here have more than one. It seems to me that Peyronie's is always looked at in isolation but should be seen as part of a more general problem. Any medication that works on one should work on all. If TV, for example, actually worked as claimed, why wouldn't it be in use for Dupuytren's contracture - a relatively common disorder for which people have little reluctance to seek treatment?
Hopeful,
I finally have an appointment for my first iontophoresis treatment in a couple of weeks. It only took 7 damned months.
Treatment will be fore 4 weeks. I'll let you know how it turns out.
Tim
Please explain from your post..
This is tha main reason I like the EMDA form of verapamil - it goes where the action is, and for me, it seems like it *could* work since the lesion is pretty close to the dorsum of my penis. No side effects so far.
I am still considering IONTOPHORESIS.. but cant get any substantial data.. this uses verapimil... electrically--
Hopeful
A couple of answers to requests for clarification:
I like iontophoresis because it drives drug into the body right where the lesion is located. (this is similar to injections) and I like that, in general, over a drug I might have to take orally to get an effect at a (hopefully) targetted site. I like iontophoresis because a needle seems traumatic and possible to *miss*, to cause damage elsewhere, and to induce scar formation itself (I am reading here about folks who did papaverine injections and formed new nodules there).
The problem is that decadron is positively charged and verapamil is weakly negative, so the Physion folks feel that the two drugs are piggy-backed together (presumably with electrostatic bonds) and carried *together* into the tissue when a current is applied.
I emailed the folks who make the "Iomed" electrodes and their research doc said that it might make more sense to simply reverse the current for a second 20 minute hit to pull both the positive and negative charged drugs into the tissue. He stated to me "nobody knows the best way to do this yet". I finally opted to do it exactly the way it was done in the research protocol in Italy.
And to "J", I do have a very mild dupuytrens, but not the other ailments described. The skin over my palm is going to be *very* resistent to iontophosreis, though, because of it's thickness, the main reason this has not been tried yet (to my knowledge). Of course, if it works for my Peyronies Disease, I am going to give it a try anyway. I don't have the Dupuytren's Lederhose (foot problem) disease, but wonder if that might be more approachable via iontophoresis.
Tim
Tim... are you using the Physion system.. or are you going to try it?- confused?
Hopeful
I like iontophoresis because it drives drug into the body right where the lesion is located. (this is similar to injections) and I like that, in general, over a drug I might have to take orally to get an effect at a (hopefully) targetted site. I like iontophoresis because a needle seems traumatic and possible to *miss*, to cause damage elsewhere, and to induce scar formation itself (I am reading here about folks who did papaverine injections and formed new nodules there).
Tim468 - agreed that the palmar fascia is hard stuff, but the Dupuytren's tissue is obviously easy to locate. If Verapamil actually worked, why isn't it being injected directly into Dupuytren's contractures? The discomfort of that procedure would be minimal, as compared to radical surgery - of which I've had 2.
Dear Hopeful,
I started myself on the iontophoresis. So far (one week in), no obvious difference, but it is early yet.
For J - I am not sure why verapamil injections have not been tried in Dupuytrens contracture. I will do a little reading on the subject.
Tim
I used the TV from PDL labs and some somewhat of a decrease in curve, and my penis softened, I did not get an 85% cure or whatever they claim. Although it did work somewhat. I'm only 22 and have Peyronies Disease. I got it at age 15 from a direct blow to my penis from a soccer ball with internal bleeding I believe. I also tried the regular over the counter verapamil, which worked somehwat, but eventually I reached a wall where it was no longer effective.
I'm looking to try Iontophoresis, does anyone know what doctor will prescribe it to me, and where I can get the equipment?
Chris Sides
Hello men, Kimo here, sorry i haven't posted or been around much, but i have been so sick for the past 6 months and still not over it yet..Anyway's thought i'd post on this one about improvement on condition...
My Peyronies Disease improved with prescribed Topical Verapamil and Vita-E and later i learned that massaging the plaque area also helped...After 5 months i had regained about 85% back to normal and i stopped using the TV because of finances...4yrs later i started using it again and did so for 12 months to see if i could fully recover all the way straight, but it didn't.....BUT, what it did do was break up the plaque completely.....In the past week i have noticed that now i have another hard plaque area with pain in a different area..I can't believe it but it's kinda resessed back inside my body where i would not be able to apply the TV if i wanted to...So i am going to keep taking vita_E and do the massage and be patient, and hopefully it will go away or at least quit hurting......thanks,,,,kimo
pudder135,
When I asked my Uro about Ionto, I got a blank stare. I had to explain what it was to him :-\! Needless to say, he didn't/wouldn't prescribe it for me.
The only Dr I've been able to locate is Dr Levine in Chicago. He offered to set up a phone consultation for an evaluation (I'm in Texas), and if he thought I was a candidate, he could supply the machine and meds BUT it wouldn't be covered by insurance, and thus the total co$t would be out of my pocket.
This is for Steve and Kimo. Steve, I live in Austin, Texas and my Doc look confused as well when I explained the iontophoresis.I am curious about how many others in this area might could be helped with this procedure if there was enough info for the Urologists. I have gone to 2 docs since I found out about this condition 3 months ago.I have been prescribed Topical V and been using it 2 months now. Very pricey. Kimo, I am glad I have found at least 1 person that has had success with it. I just started Infrared lamp therapy before I apply it(per Joshua post). Haven't been massaging though. Zig the Twig out
Zig, just a note to let ya know what i experienced with the TV. Yes, it is gonna itch for maybe the first couple of months, it stops itching afterawhile.
I didn't notice any change until the end of the third month and it was all of a sudden..I was about ready to give up but decided to keep going after seeing some change taking place. Before i started with the TV i was bent and twisted like a donut and in a lot of pain both soft and erect..Everyone thinks i'm crazy but i found a cure for the pain...I thought i'd try a magnet, i bought one that was 2inches by 4inches and wore it in my shorts while sleeping. It really did help, after 3 days my pain was going away and after 3 weeks i was pain free...
I'm glad i kept using the TV,,from the 3rd month to the end of the 5th month there was a lot of change..My penis came back to about 85% straight and was good enough for having sex with my wife and i stopped using the TV after 5 months as i just didn't have the finances at the time even though my ins was paying for most of it........And as i have said 4yrs later i began using the TV again to see if it would make me all the way straight, i used it for another 12 months and it did break upall of the plaque but i still have scar tissue left in that area, and i can live with that...Now it's the new nodule farther back inside that is hurting, so i am massaging that every morning while taking a shower....
If anyone has any more questions , feel free to im me or write a private e-mail and i will be happy to help in any way i can,,I would say most of all to keep a positive attidude and be patient and look to others for moral support and advise..What works for one may not work for another but anything is worth trying and don't give up to soon...I just hope that something i am able to contribute will help someone .....
Kimo
Thanks for the info Kimo. I sent you a list of questions to your personal yahoo account when you get the time.
I thought I'd post here what I sent a member in response to a private email abuot iontophoresis. Hope this helps someone else do it with a minimum of fuss and mess.
Here are some generic thoughts and suggestions:
1) Soak in a hot tub for a while immediately before iontophoresis. There are data to suggest that penetration of medications into the tissue is easier through well-hydrated skin.
2) Set up and prepare your application area first. I do it in bed at night. I pop the tops off of all my vials first, get out the syringe, get organized etc.
3) Do NOT shave the penis/scrotum, pubic region just before application. In order to get good adherence of the sticky pad (and to avoid hair-pulling pain), it makes more sense to shave the area THE DAY BEFORE. This includes the area at the top of the thigh where the grounding pad goes. Make it big enough to allow placement without catching hairs! Shaving at the base of the penis on the dorsum and a bit up onto the lower part of the belly, allows placement of the dispersal unit close to the base of the penis.
4) To draw up any liquid medicine, first draw up that amount of air, and inject it into the bottle, and then start to withdraw the medicine. Thus, the Syringe is filled with air to 4cc, and that is injected into the bottle of verapamil, and this makes it easier to withdraw the solution. Carefully and gradually pull out the needle, as you withdraw medicine, to get it all into the syringe. Hold the vial up to the light to be sure you can see the last bit come out.
5) After getting the larger volume verapamil, redraw about 2 cc of air into the syringe, and inject 1 cc of air into the dexamethasone vial. Them as you did before, withdraw the dexamthasone into the syringe, bringing the total volume there to 5 cc. Re-cap syringe carefully and set aside to use when ready. I gently mix the meds by tipping the syringe back and forth.
6) Place the dispersal unit on the dorsum of the penis (that is the part that faces "up" when you have an erection and it is sticking straight out in front of you!). Thus, the electrode connection on the dispersal unit is facing up. It says that it is easier to do if you first get a partial erection, but it is my experience that it is not too easy to get or keep an ereciton when you are about to apply electrical current to your penis!!
7) Carefully insert the needle tip into the opening on the dispersal unit. I have found it is MUCH easier to get the fluid in without overflow if you gently lift the unit up and away from the skin of the penis (to which it is adherent). Conversely, if you push downward, it tends to bubble back up and out of the dispersal unit. When there is enough fluid to cover the inner tip of the electrode (just look at the unit when you get it - you will see what I am talking about), you can cap it off with the connector to the stimulation unit.
The black connector goes to the grounding pad; the red to the penis end/dispersal unit. With the Physion unit you just turn it on. If you have a more fancy one, then what you do is set it to a 4 milliAmp setting and run it for 20 minutes (which is what the Physion unit does automatically).
Finally, in terms of insurance coverage, I did not even try to get it covered, although I might be able to if I really fight for it. But I do have a deductable set-aside from my paycheck called a "FlexFund" and I can get reimbursed (at least) for the costs of out of pocket medical care. Thus, these medical costs are paid by you, but you don't have to pay taxes on the money that you earned and then spent this way.
Tim
Hey guys,
I'm 22 with peyronies since age 15, I like Tim have ordered the Iontophoresis machine, VED, and appropriate Meds, it costed me $1700 totaly and I got it from Dr. Carroll in Orlando, Florida, its the physion version like Tim. As Tim has described it sounds like a process to get everything set up, I should have it by 7 days I"ll keep everyone updated on the results. I"ve used topical verapamil before and it HAS worked but it was no miracle cure, right now I've got some verpamail from PDlabs and still don't know if I trust those bastards, that study by Dr. Fitch said it was done for 1-3 months, yet they tell you to buy it for 6-12 months when you call them... chaaaaaaaaachingggggggggg. The guy Dallas I talked to on the phone said they are in the second phase of FDA trials. I don't know I'm still up in the air on TV, I think it does work a little, but there miracle claims I believe are way overstated. I will try the iontophoresis until I run out and then switch back to the TV from PDlabs, I"m under my parents insurance and trying to get everything covered, since this disease is serious and real, but you know insurance companies, they dont want to pay for crap unless your in the ICU and dieing.
ComeBackid
ComeBackid,
I along with everyone here can relate to your total frustration, anger, impatience, and pain. That in fact why this organization was formed and individually the reason each of us are here. This is the place to freely express any results you experience, to expose any bad deal or any failure you encounter with any company, doctor, or organization. I am struck by the way you described the people at Peyronies Disease labs and was waiting for you to justify that remark but never picked it up. Do you have information about Peyronies Disease labs that you are not sharing with us? Do you have strong evidence that leads you to mistrust them, or was that that based more on your frustration than any know shortcomings of the people at Peyronies Disease labs?
To Everyone,
I have absolutely no evidence to believe PDlabs is being dishonest, I got my peyronies disease at age 15 after being hit in the penis in the flaccid state. About two or three years after this I contacted a man from San Diego who sent me his PDlabs verapamil. I used it, and after one day it softened my penis and straightened it out somehwat. The results were amazing. However then I quit usage until I built up the courage to visit a urologist. I convinced him to prescribe me topical verapamil. He did but this time I got it from a local pharmacsit who conviced me at that young age he could make it cheaper. I used that for about six or eight months and it seemed to work somehwat. After I ran out I quit using it for a few years. Lately my peyronies has gotten worse after a long period (years of stabilzation) and I went back to this pharmacist and he has sold his compound center and retired. I've ordered topical verapamil from Pdlabs and like Tim I've ordered an Iontophoresis machine, VED, and medicines for $1700 which will arrive next week hopefully by Friday. I've just been extremely frusterated with a urologist who was ignorant and told me to wait, and tried to sell me a circumcision, which is absolutely ridiculous. Typical American doctors will sell any surgery to make themselves rich, while they cut away your penis and your sensation. I feel that the peyronies surgeries are similar in this fashion, and can really leave you with unwanted side effects. When I presented my claims of the use of topical verapamil success to Dr. Mullhall on the other forum, he discounted me, I'm probably the only one on here with some face in TV, however I just want to know if ANYONE knows anything about PDlabs being a scam before I drop thousands on their TV. When I get my machine I"m going to try the Iontophoresis for a period of weeks like Tim and stay in touch with him since he has been doing it as well as me. After this I will switch back to the TV. My belief is that TV works a little, but Dr. Fitch has exagerated his results greatly. In the original study if you read it closely he says treatment duration was 1-3 months. However, if you call them personally they say you should be on it at least 6 months... hmmm weird wouldn't you say. I honestly don't know what to believe, I think we all need to pull together and share experiences without discounting each other in search of a cure or positive result. I will keep everyone posted on how my Iontophoresis works out, with me and Tim both trying it out we should be able to determine if this works or not.
ComeBackid
After one week of TV from Pdlabs the only thing I've noticed is that my shrunken penis in the flaccid state seems to have more blood flowing to it, and its bigger. My erection is still the same size and has the same bend. It is hard to determine at this point if it is any softer or any reduction in plaque. I will continue to monitor i closely and keep everyone informed. So far I've been following the instructions except that when i apply the gel I rub it in one time for about 2 mins, instead of applying gel for 1/12 mins and then taking a 5 min break and rubbing it in again for 1 1/2 mins again. I usually leave on my applications for a minimum of 2 hours usually 3 hours, then shower off, I've been doing two applications a day, have only missed one application in 7 days. Waiting on the Iontophoresis equipment which should arrive next week sometime.
ComeBackid
To everyone,
I was surfing the web and found this post by a lady named Kim, she had an email address posted and so I emailed her to see if I could find out more information and it came back as non existent, however it was posted years ago and it is not unusual for people to change their email addresses. The treatment she describes is similar to what Dr. Carroll from Orlando said I should be doing, he stressed you need to use the IONO first to soften the plaque before you can use a VED or you will make the plaque worse.
"I have been working as a nurse for a urologist for four years. He treats Peyronies with Verapamil and we have seen great results. The difference is we use what is called Iontophoresis Treatment. The patient starts out with a penile ultrasound so the plaque can be identified and located. The patient then comes in once a week for a 20min treatment for 12 weeks. With these treatments we put liquid Verapamil on a patch that is attached to the penis and then the Iontophoresis machine is hooked to this and turned on. The patient just lies there for 20min while the machine works by infusing the Verapamil directly into the plaque. While the patient is on this treatment he is given a supply pack which contains Vitamin E capsules and Hydrocortisone 2% and a Vacuum Erection Device. The patient takes 2 Vitamin E capsules by mouth daily. He also opens one of the capsules of Vit E and directly applies to the plaque and also applies the Hyrocortisone 2%. He does this daily along with using the Vacuum Erection Device. This stretches the penis and helps work out the plaque. So not only are you getting 12 weeks of treatment but you are also doing these at home that will help move the process along faster. Ultrasounds are taken at the 6th and 12th visits also to chart the improvement. I have seen some great results and some happy patients. Feel free to ask questions."
Kim
I also wanted to say that I emailed Will Sheppard from Talon Inc. and called and left messages twice with no response in regards to the Topical Verapamil from PDLabs. Either hes scared to be questioned by a 22 year old or hes just to busy for patients calling him... or maybe is he on a nice cruise since hes a millionare now?
ComeBackid
ComeBackid, what info exactly are you trying to get from Talon. I didn't even know about this place until I received an email from another member explaining they had won the lawsuit against PDLabs and are making the TV much cheaper. I am scheduled for another appt. with my Uro in 2 weeks and I want to be armed with any info. He had prescribed the TV from PDlabs in Feb. I am down to 2 tubes and because of it's price am considering whether to continue and/ ???or look into Iontophoresis. I actually asked him about this treatment and he wasn't aware of it. He has agreed to a prescription VED. Don't know if Ins. will pay though.
I'm looking to talk to Will Sheppard personally and ask him exactly how the drug works, why PDLabs charges a high price for it, how I can reach Dr. Fitch personally, and in general just probe him to gage his credibility. I also want to ask him some questions about if it really does increase blood flow which I have noticed.
I was in the same boat as you in regards to IONO, the one local urologist who specializes in peyronies disease didn't know anything about IONO delivery of verapamil at all. He just started talking about injections with verapamil and rattled off statistics. He seemed smart and intelligent, he said with injections he's seen 50% of guys respond with improvment, at least thats the drift I got. I think a lot of urologists don't follow the newest treatments like we do and you have to understand that. You can contact physion directly if you can find a doctor to write you a prescription.
Or you can call Dr. Carroll in Orlando, Florida, if you'd like the phone number just message me and I can give it to you. With me he did a phone interview and was very knowledgable and says he talks to Dr. Levine from Chicago in regards to IONO treatment and its effectiveness on peyronies disease. He said most people see at least some benefit from the treatment. He recomends not using the VED until after a few weeks of IONO treatment as he says you have to soften the plaque first. Old Man is the expert on VED's so you might try private messaging him for information on that. Hope this helps.
ComeBackid
Will Sheppard (Talon) has been there from the early days of TV, marketing against PDL. I don't know the reak story but I think there was some connection between Easterling (PDL) and Sheppard, they had a falling-out and Sheppard conitnued selling TV on his own. A legal battle ensued and dragged on for years. Whether Sheppard is selling the exact formula patented by PDL, I don't know.
The mechanism is supposed to be this: verapamil stimulates cells to produce collagenase, an enzyme that will break down the excess collagen causing our problem. This has been demonstrated with cells of the appropriate type in laboratory cultures. Whether it actually works in the human body is another matter. There is also the matter of getting sufficient verapamil in contact with the fibrotic tissue. Verapamil is a large molecule which doesn't readily penetrate the skin. Easterling claims to have come up with a formula that carries it through the skin to the affected tissue. Some urologists have been very skeptical of that claim and performed an experiment which they say proves that no such penetration occurs. Here's the abstract:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12441945&dopt=Abstract
The numbers reported by Dr. Fitch in his study have to my knowledge not been duplicated and PDL now offers less optimistic numbers when asked. Neither Easterling nor Fitch have, to my knowledge, made any public statements defending that study. PDL has also made statements about FDA trials for several years. I can't find any such trial on the NIH web site for clinical trials (clinicaltrials.gov).
Any member that has ever had Verapamil Injections to treat Peyronies Disease, please go to https://www.peyroniesforum.net/index.php/topic,298.msg2773.html#msg2773
This is just a reminder to for those that missed the message. Please follow the link and take the poll Only if you have had Varapamil Injections. I will post the results as soon as we think everyone treated with VI has had a chance to contribute.
If anyone is considering VI in the immediate future you can contact me privately for preliminary results.
Thanks
The survey takes no more than 1-2 minutes
J,
My thinking was that maybe since Will had the fallout he will come out and bash PDLabs and Easterling, and maybe put an end to the debate about whether TV from PDLabs really works or not. Perhaps he could tip us off if the study by Dr. Fitch was exaggerated, I'm just probing around, I found it interesting Will won't even call me back when I have a question.
When I talked to Dallas Dryden a few weeks ago from PDLabs he said they are in the 2nd phase of FDA trials, you say there is no record of PDLabs doing any FDA trials? If you have nothing to hide then why lie if your PDLabs? I think it would help to bring closure to this issue for a lot of people and find out the real deal, the scientific study you post also has credibility by credible doctors. Also as you have noted to me personally PDLabs has produced no additional studies, doesnt defend themself when they get grilled by forums like this, and hasn't updated their webpage in years. I"ll let my insurance make the payments to them.
ComeBackid
Will Shephard has been very vocal in the past on the BTC and he is registered here but has not logged in for months. You have to consider that he also makes his living selling TV. It is unlikely that he is going undercut that product. it is pretty difficult to say that "Their TV doesn't work but ours is great"
Maybe the fairest thing to say is that I'm disappointed that even after all these years, the urological community hasn't been able to get on the same page with regard to whether TV works or not.
Exactly,
How difficult would it be to do a double blind study. With the cost of TV I am sure you would get paticipants.
Well the problem is, there's supposedly been a thorough and conclusive double-blind study - the one by Fitch. Which I guess was funded by PDL. And on the other hand we have the paper by Marting et al, saying that TV has "no scientific basis". This conflict - within the urological community - needs to be resolved. But who's going to pay for another study? So there it sits.
I think that urologists who are prescribing this stuff need to be more rigorous in their evaluation. The one who prescribed it for me wasn't doing any measurements - just going by what patients told him. That's not good enough.
Hey Guy's, Kimo here, just had to jump in here and let ya'll know that the Topical V worked real good for me...I'm not trying to sell anything or make anyone's mind up for them, but i had a real good experience with it....The first time i used it , about 6 months into being twisted and bent like a donut,,i didn't notice and change until the 3rd month and by the end of the 5th month i had regained about 85% back to straight.....3yrs later i thought i'd try it again and see if it would take all the way, it didn't,,,BUT it did break up all of the remaining plaque and all i have is scar tissue where the plaque was....In the begining my plaque was the size of a quarter and very painful......The scar tissue hurts a little when i'm erect but it's not bad..The second time around i was on the TV for about 12 months.....
I has been a yr since and now i just noticed about 4 weeks ago that i now have another lump recessed back inside my body but on the top side of my penis...It is really hurting when erect and having intercourse , but i try to ignore it,,,i do massage it when in the shower,,,as i know doing the massage does help,,,it did with the first plaque.....
I know that there is no one sure thing for everyone, but i'm glad that at least we can all come here and share our experience and maybe help someone in the process......
Malama Pono,,,,,,Kimo
Kimo,
I am happy for you that Topical V worked! In my case, Topical + VI did nothing. I have been stable the last few months I thought, and lately the pain when erect has returned and wakes me often during the night and is especially painful mornings and I think the bend is again approaching the original curve of about 90 degrees. Not sure what to do...call the doc and get what? Recommendations for surgery? Learn to live with it? Suffer in silence?
Hawk,
If Will really wanted to sell more TV you'd think he would come on a forum like this more often and promote it, however maybe he doesn't want to be seen as a salesman and would rather let us spread the word to each other. All I know is that verapamil did seem to work for me when I used it, but after a period of time I switched over to a generic brand made by a pharmacist near my house who switched the application gel a few times that was mixed with the verapamil. After awhile I reached a wall and saw no additional improvment. The only explanation is that the verapamil increased the bloodflow, which it seems to be doing now, and it really didn't reduce the plaque.
ComeBackid
Thought I'd jump back in. My Urologist, explained to me that about 30-40% of his patients had success with TV. He didn't go much into detail other than the successfull patients were able to get an erection without pain and most of the plaque had broken up along with Vit E units. He didn't go into before/after curvature or anything else. I was prescribed TV 15% in Feb. this year and told to apply 4 times a day. Although I have been averaging 3 times a day, I am also trying the infrared therapy (ie. Joshua). I have had the "Hourglass shape" since December 05 after trauma following intercourse. The only thing I have noticed since using the TV is no pain now and firmer erections. Plaque is still there although KIMO has given me some hope. I am considering talking to my Uro again about the Ionto and signing up here at least to gain some knowledge. I will approach him with the fact that living in Austin, Texas with San Antonio, Houston and Dallas just a couple hours away would probably produce an innumerable amount of potential patients. Knowledge is Power-Zig The Twig out
I hate to be cynic here, but most patients wouls agree that there are only 2 issues to be considered at bottom line, reduction of deformity, and better erections. Plaque reduction very often occurs as plaque matures and it can sometimes make things worse. Also, pain goes away with virtually all patients within the first 12 months or so with absolutely no treatment. I could tell most patients to draw a smiley face on their penis once a day and their pain would be gone within 1 - 6 months assuming they were already into Peyronies Disease at least 3 months when the came to me.
I am not saying TV does not work, only that in my opinion, reduction of pain should never be considered a sign anything is working in Peyronies Disease unless you can turn the pain on and off by starting and stopping the treatment. Reduction of pain is the expected norm with Peyronie's Disease. It is the just the normal progression one expects to see even without treatment.
Hawk:
I think your post is on the money... I have seen many many studies on Peyronies Disease that seem to always include the relief of pain in the 70-90 percent range. I don't know if I completely agree with you that plaque reduces with age. However, I can't argue the fact that is exactly what happened with my case. so you might be right here as well. The bottom line is we may not even be realising a placebo effect with verapamil treatments but just the natural regression of the disease. This seems to be the problem with the study of Peyronies Disease treatments. They should likely only include curve reducing and erectile improvement.
Some of the studies. like the one in the archives regarding iontophoresis, demonstrate a *difference* between the study drug/procedure and placebo or alternative drug in effect on pain.
This suggests that pain reduction can be associated with certain interventions. It is a relief to see that most newer studies include measure of erectile function, pain, quality of life and not just curvature.
I am halfway through my first iontophoresis, and so far, no change. One caveat - I seem to be "active" right now and if it is only holding me from getting worse (who could ever know?? - I don't have a "control Tim" to try alternative treatments on). But the published data suggest that someone with longstanding problems like me would be harder to treat. Similarly, thicker plaque, or more established scar might be harder to treat as well. Therefore, I promised myself that I would do three cycles before I said this was of no help.
One other issue with intophoresis: I am using the Physion application cups. The application pads by IOMED are probably better able to be applied in awkward positions than simply the dorsum (I have played around with some samples and the TransQ-E pads seems best). The next go-round, I am going to use the IOMED pads - full report to follow....
Tim
Physion cups and setup: http://www.physion.com/peyronie_edu/patientfriendly.html
IOMED stuff: http://www.iomed.com/prod-transqe.html
I started my first IONO treatment today, and as Tim has pointed out the hardest part is to get the cup on your penis without the liquid leaking out the sides. Its almost impossible to keep an erection or semi erection, and the cup is just to large for my penis in the flaccid state. I either need new smaller cups, or Ill have to use tape to somehow seal the edges of the cup. The treatment seems very difficult to administer, even with the help of someone else it wouldn't help me cause the cups are simply to big.
ComeBackid
I was searching in some other forums about IONO treatment and I came across this post:
Date: 10/21/2005 1:06:22 PM
Name: Hawkman
I've now decided to give these machines away free at www.peyroniesforum.net
Is someone inpersonating Hawk?
ComeBackid
Tim... a few questions.
1. How long have you had Peyronies Disease
2. How Peyronies Disease- what is the curve- degree- etc.
3. How long have you been with IONTo?
4. What Dr. did you go to?
5. Are you using the Physion?
6. The protocol- did your doctor give this to you- or is this your own
I visited Dr. Carroll and walked away with a $1500 bill and no machine- I have the prescription- have done a lot of research and it seems to make sense as it (IONTO) is being used for numerous applications in the medical field.
I am waiting for a company that makes a needlees injector who has contacted AUxillium to see if they can participate in their trials... still waiting to hear something- as I do not believe sticking a needle in the penis is a smart thing to do..
Please let me know..
Hopeful
Quote from: Tim468 on April 25, 2006, 11:18:33 AM
I thought I'd post here what I sent a member in response to a private email abuot iontophoresis. Hope this helps someone else do it with a minimum of fuss and mess.
Here are some generic thoughts and suggestions:
1) Soak in a hot tub for a while immediately before iontophoresis. There are data to suggest that penetration of medications into the tissue is easier through well-hydrated skin.
2) Set up and prepare your application area first. I do it in bed at night. I pop the tops off of all my vials first, get out the syringe, get organized etc.
3) Do NOT shave the penis/scrotum, pubic region just before application. In order to get good adherence of the sticky pad (and to avoid hair-pulling pain), it makes more sense to shave the area THE DAY BEFORE. This includes the area at the top of the thigh where the grounding pad goes. Make it big enough to allow placement without catching hairs! Shaving at the base of the penis on the dorsum and a bit up onto the lower part of the belly, allows placement of the dispersal unit close to the base of the penis.
4) To draw up any liquid medicine, first draw up that amount of air, and inject it into the bottle, and then start to withdraw the medicine. Thus, the Syringe is filled with air to 4cc, and that is injected into the bottle of verapamil, and this makes it easier to withdraw the solution. Carefully and gradually pull out the needle, as you withdraw medicine, to get it all into the syringe. Hold the vial up to the light to be sure you can see the last bit come out.
5) After getting the larger volume verapamil, redraw about 2 cc of air into the syringe, and inject 1 cc of air into the dexamethasone vial. Them as you did before, withdraw the dexamthasone into the syringe, bringing the total volume there to 5 cc. Re-cap syringe carefully and set aside to use when ready. I gently mix the meds by tipping the syringe back and forth.
6) Place the dispersal unit on the dorsum of the penis (that is the part that faces "up" when you have an erection and it is sticking straight out in front of you!). Thus, the electrode connection on the dispersal unit is facing up. It says that it is easier to do if you first get a partial erection, but it is my experience that it is not too easy to get or keep an ereciton when you are about to apply electrical current to your penis!!
7) Carefully insert the needle tip into the opening on the dispersal unit. I have found it is MUCH easier to get the fluid in without overflow if you gently lift the unit up and away from the skin of the penis (to which it is adherent). Conversely, if you push downward, it tends to bubble back up and out of the dispersal unit. When there is enough fluid to cover the inner tip of the electrode (just look at the unit when you get it - you will see what I am talking about), you can cap it off with the connector to the stimulation unit.
The black connector goes to the grounding pad; the red to the penis end/dispersal unit. With the Physion unit you just turn it on. If you have a more fancy one, then what you do is set it to a 4 milliAmp setting and run it for 20 minutes (which is what the Physion unit does automatically).
Finally, in terms of insurance coverage, I did not even try to get it covered, although I might be able to if I really fight for it. But I do have a deductable set-aside from my paycheck called a "FlexFund" and I can get reimbursed (at least) for the costs of out of pocket medical care. Thus, these medical costs are paid by you, but you don't have to pay taxes on the money that you earned and then spent this way.
Tim
Tim... a few questions.
1. How long have you had Peyronies Disease
30+ years - but it is getting worse lately.
2. How Peyronies Disease- what is the curve- degree- etc.
Dorsum, moderate upward curve, with two new area of induration (dents)
3. How long have you been with IONTo?
Halfway through it - no results yet, but that was sort of expected as my disease is longstanding.
4. What Dr. did you go to?
None - I am an MD - just ordered it for myself.
5. Are you using the Physion?
Yes.
6. The protocol- did your doctor give this to you- or is this your own
These were simply tips I posted to help others with some of the details that are not well explained online or in the directions.
Tim
I thought I would post some information I obtained from a couple of researchers associated with iontophoresis - names and some parts deleted for privacy. Sort of an FYI to share some of what I have discovered along the way... (emphasis or editorial comments are added in bold font).
********** an email from IOMED *********
Last week while traveling we had promised you a more thorough response to your questions. Below you will find your questions along with responses from one of our scientists. Please let us know if we can be of any additional assistance.
1) do you have any data on standard differences for skin in different anatomic sites (i.e. back, arm, palm) regarding resistance?
Typically, the skin resistance on the palm and sole is significantly higher than on other body sites. The dose controller (Phoresor) provides sufficiently high voltage to deliver the electric current and to compensate for the higher resistance. However, differences in the stratum corneum thickness may reduce drug penetration to these sites as compared to other body sites.
2) do you or anyone else compound medications for delivery via this transdermal route? For instance, Peyronies disease was treated using transdermal delivery of "8 mg dexamethasone and 5 mg verapamil diluted to 5 mL with water." Or, is this something that a lab (I have a lab) could easily mix up on their own? Could any compounding pharmacy do this?
There are number of papers out of Italy indicating good success rates using iontophoresis of verapamil and/or verapamil in combination with dexamethasone.
Verapamil hydrochloride is a relatively small molecule (FW 491) that is water soluble and positively charged at physiological pH, therefore, it is a good candidate for iontophoretic delivery. The drug should be delivered from the positive (+) (red lead) polarity electrode patch.
There is a commercial injectable formulation of verapamil (Abbot Labs) that contains 2.5 mg/ml verapamil hydrochloride and 8.5 mg/ml sodium chloride. The presence of a relatively large quantity of NaCl is undesirable because small, highly mobile Na+ ions will compete with the drug for delivery. Your lab or any compounding pharmacy can can easily prepare more iontophoretically efficient formulation. We would suggest preparation of a 20 mg/ml aqueous solution of the drug.
Dexamethasone sodium phosphate (disodium) is a relatively small molecule (FW 580) that is water soluble and negatively charged at physiological pH, therefore, it is a good candidate for iontophoretic delivery. The drug should be delivered from the negative (-) (black lead) polarity electrode patch.
There are commercial injectable formulations of 0.4% (4 mg/ml) and 1% (10 mg/ml) Dexamethasone sodium phosphate. Again, your lab or a compounding pharmacy can prepare more iontophoretically efficient formulation, such as 20 mg/ml aqueous solution of the drug. ["aqueous" means "dissolved in water"]
There is no established protocol for iontophoretic treatment of Peyronie's disease. If you choose to mix verapamil with dexamethasone we would suggest to iontophorese first from the negative (-) polarity (black lead) then switch to the positive (+) polarity (red lead). If you choose to use the mixture, there is no reason to use simple 1:1 verapamil : dexamethasone mixture. More efficient drug delivery can be accomplished however in the two separate sessions by sequential treatment using iontophoretic electrodes hydrated with the single drug formulation.
3) How would drug delivery differ from your gel system compared to a chamber system ["chamber" refers to the Physion style of a cup for the medicine, instead of a gelfoam patch] (see above reference)? Is any difference likely to be reliably similar for different drugs? Or could one predict the difference based on the chemistry of the individual drugs?
There should be no significant difference in drug delivery from IOMED "gel system" as compared to a chamber system. If electrochemistry in the drug delivery electrode is properly controlled, the iontophoretic drug delivery is predominantly governed by the total delivered charge (current in mA x time in minutes = total charge mAïmin), formulation and drug properties.
Thanks again for your inquiry, I hope this helps.
*******************
***************** email exchange from Physion scientists/representatives
"Tim." wrote:
I thought that the verapamil and dexamethasone were premixed together, but it seems they are sent separately. Are they then mixed at the time of delivery (i.e. 2.5 mL of each for a final volume of 5.0 mL)?
Tim
******
-----Original Message-----
From: physion.com
The two medications cannot be pre-mixed because together they are stable only for 24 hours.
Physion, Inc.
*********
-----Messaggio originale-----
From: Tim
Thanks for the information...
In reading up on this topic, it seems that verapamil is positively charged at a physiologic pH, and dexamethasone is negatively charged at a physiologic pH, which suggests that verapamil would be best infused from the positive polarity lead (the red lead), and dex infused from the negative polarity lead (the black lead). If the two drugs are mixed, it would seem that it would be OK to simply switch polarity after a period of time sufficient to infuse one, then switch and infuse the other. I do not see this addressed in the literature. Any thoughts on this would be appreciated.
Thanks for all of your help.
**********
Dear Tim,
Thank you for your very correct remark on polarity. The point is that Dexamethasone has indeed a negative charge but only a slightly negative equal to one in a scale of 0 to five. Therefore Verapamil, which has all five positive charges, is the one dragging Dexamethasone. This does not imply a change in polarity, we are normally using positive polarity when administering the mix of Verapamil and dexamethasone, or when we are using lidocaine with deamethasone for different indications.
I trust this explanation fills this conceptual gap properly.
****************
-----Messaggio originale-----
Da: Tim
A: PHYSION
Oggetto: RE: Information Request from www.physion.com
Thanks for the information. It sounds like an electrostatic bond (not covalent) holds verapamil and dex together to allow them to piggyback together into tissue. Are there data to support that this actually works (for example, concentration of verapamil or Dex in solution before and after iontophoresis)?
I like this idea of them going in together - and I had wondered if one had applied a reverse polarity if it might pull the first drug OUT of tissue and back into solution - or is that too silly an idea?
************
From: physion
Once the drug is caught inside tissues and peripheral circulation we think games are over. But your idea, if applicable, would open a new circle of millionaires I dare guess. Or, with all due respect, one article could be published on The Journal of Improbable Research ( it's only some good humour meant).
Please, have a nice week end
******************************************
Overall, I learned a lot by asking and my hope is to see if I can come up with a way to treat ME that works. Hopefully this can help us develop protocols that we can use - even if our doctors don't really get it themselves.
More on this thought later...
Tim
Hopeful,
I have finally started ionto and there seems to be some improvement. Only a couple of visits so far. Have to wait to see how it goes. I am somewhat optimistic.
Phil
ARe you doing it yourselof.. or going to a doctor?- if doctor???- who???
Hopeful
QuoteI have finally started ionto and there seems to be some improvement. Only a couple of visits so far. Have to wait to see how it goes. I am somewhat optimistic.
Phil
Tim.. good research.. I have done a lot myself.. and I was trying to find out if there were other IONTO systems such as BIOMED that could do the same thing for less money..I am sure the cost for manufacturing this simple device could not be more than $50-$60 if that.. I was just confused with the polarity issue and drug issue. I saw your responses from Physion.. were you communicating with Willer or Onella?- and did you get a list of the other doctors.. besides doctor Carroll that is using the device?- I would be curious to know.. and which one are you using Physion?? or BIOMED?
Hopeful
I thought I would post some information I obtained from a couple of researchers associated with iontophoresis - names and some parts deleted for privacy. Sort of an FYI to share some of what I have discovered along the way... (emphasis or editorial comments are added in bold font).
I chose Phsyion - in retrospect the IOMED one might have been a better choice for alterations in current, etc.
I spoke to many folks at the companies - most of the correspondence was from researchers associated with te companies.
One other small factoid: when you do the ointophoresis, drug leaves solution and is driven into the tissue. The VOLUME of the water does not change.
Tim
Guys,
I'm sorry for my lack of input into the forum of late. I previously needed a break from the whole Peyronies Disease issue as it was just weighing on me, and then as soon as I felt okay delving back into it...I got enormously busy with work. I have answered those of you who wrote me individually about Ionto recently, but Hawk rightly suggested I update the board on my use of it. Here goes...
A little background: I have a 10-15 degree "tilt" to the left. I use the word "tilt" because there isn't really a "bend," just more of a tilt from the base to the left. Detecting scar tissue has been problematic because I had an ultrasound, but nothing was detected. However, AFTER the ultrasound, I felt a small bb-sized plaque dead center, as has been described by a number of people here on the board. Since then, I've also felt a few small scar-like bumps near the base on both sides. As such, it's somewhat difficult to tell exactly where the "tilt" is coming from. Since the ultrasound was done prior to this, I haven't actually seen anything telling me exactly where it's coming from (presumably the left near the base, but the center plaque may be contributing).
I got the Ionto device last fall from my doc here in Chicago (you can probably figure out which one). I learned to use it and used it religiously at first, probably 2-3 times a week. I noted some "loosening" at first. By that, I mean that generally the "pull" of the tilt wasn't as strong. The problem I noted though was that I didn't know which plaque/site to treat, so I basically used the device on different locations every time. This obviously weakened its effectiveness because each site wasn't getting as consistent a drug delivery if I had done it at the same site every time.
However, it became somewhat harder and harder to use religiously as it does take a fair amount of time to use. I tended to spill the device frequenty, and often the liquid would dip below the level of the electrode, causing the thing to turn off, in which case I had to start over. Long story short, over time I used it less and less.
In total, I have used the Ionto device probably 20-25 times. Obviously from the above, there are a number of reasons why I think one could say my usage was not as "directed and thorough" as it could have been. I've considered going back for more Verapamil as I have been close to out of it, but basically have delayed. I think if I do do this, I'd keep to a more regimented use of the device.
Did Ionto work? Unfortunately, I don't think I'm qualified to say. But given the above, I did note some loosening, yes. It did not decrease my plaque size, and my "tilt" is still there. It is however somewhat less strong than it was. If that is due to the Ionto unfortunately I also can't say with absolute certainty - time may have provided the same change; I simply won't ever know.
I would however like to re-start Ionto, perhaps in a month or two. If I do I will tell the board. Again, I'm sorry I've been somewhat out-of-the-loop. I hope the above somewhat helps people as they consider options.
Best to all you guys!
dcaptain
Thanks Tim...
Do you have a contact at BIOMED?- If so can you post or would you prefer to e-mail?
Hopeful
Quote from: Tim468 on May 09, 2006, 10:09:43 AM
I chose Phsyion - in retrospect the IOMED one might have been a better choice for alterations in current, etc.
I spoke to many folks at the companies - most of the correspondence was from researchers associated with te companies.
One other small factoid: when you do the ointophoresis, drug leaves solution and is driven into the tissue. The VOLUME of the water does not change.
Tim
Thanks for posting as i am still weighing on IONTO... I am sorry that you were not able to complete your regimen. Also, did your doc put you on the SOMA protocol as well as this was suggested to me by Dr. Carroll???-
Hopeful..
Quote from: dcaptain on May 09, 2006, 05:52:04 PM
Guys,
I'm sorry for my lack of input into the forum of late. I previously needed a break from the whole Peyronies Disease issue as it was just weighing on me, and then as soon as I felt okay delving back into it...I got enormously busy with work. I have answered those of you who wrote me individually about Ionto recently, but Hawk rightly suggested I update the board on my use of it. Here goes...
Several responses lumped together.
dcaptain - I am facing much the same problem that you are - what area to treat? I am starting to favor the use of the IOMED instead of the Physion cups, as the cups cannot be placed effectively on the side - they must "face up", or they will leak. Also, the design does not favor treatment of areas underneath compound curves (like on the side at the base). The medicine-holding pads don't leak either.
hopeful - As for contacts at IOMED, I simply wrote to the contact person and asked some scientific related questions. The questions wre bounced to a staff scientist who gave me his best answer (which are posted below). I would always recommend that anyone else do the same. My background might have allowed me to ask "better questions" or ones might have been more interesting to them. YMMV...
I am also thinking about approaching a compounding pharmacy to make an aqueous solution of verapamil at 20 mg per ML to see if that works better, and given alone instead of with decadron (dexamethasone). Since decadron and verapamil have opposite charges, I am still struggling with the concept of verapamil attaching to decadron and the two of them migrating into tissue together.
One way to test this would be to simply do the treatment and to then draw a drug level of the remaining solution. Ideally, it would be devoid of drug (ie all has migrated into the tissue). I wonder what the reality is...
Tim
What would it take to actually find out how much (if any) verapamil actually gets to the affected tissue, using iontophoresis?
As someone who works in engineering it often boggles my mind to see how medical problems have to be approached with guesswork when some seemingly straightforward experiments could clear everything up. The iontophoresis companies say, you might try this or that, hard to say, it could work; and as an outsider I'm thinking - why all the mystery? Isn't this a solvable problem?
Of course I realize that doctors have to work with live human beings and can't experiment at will. But sometimes it seems like it isn't even considered. Would it be possible to obtain tiny tissue samples after trying these various iontophoresis configurations, solutions, and parameters? What about a systemic test for verapamil - i.e.a blood sample?
I would suspect it would be very easy to apply iontophoresis preop, and take the tissue during surgery as was done with the topical varapamil study. I agree with you J. Any penile surgeon could do it, even a bad one. Again, it seems it would take no approval since they are cutting tissue anyway, so why are we discussing it when it could have been done years ago?
After talking to Will Sheppard I learned that there are many different types of collagen that can make up the plaque in the penis, they can be mixed or individual. No one has actually proven verapamil does break down the plaque on a HUMAN. Perhaps verapamil really doesnt work on humans, and thats why most people experience no gain from the injections. There is a method in europe where they stick a needle into the penis and make it straighter, they say it works best in calcifed plaques. Perhaps the very few patients who see any gain from injections are those that have calcified plaques that are hardened, and the needle breask it up, while the needle going into the majority of patients who's plaques are not calcified but still soft get worse when the needle invades through the skin. Maybe verapamil injections have nothing to do with verapamil itself, but the needle and what kind of plaque you have.
Any thoughts guys?
The survey to me, shows no reason to even get injections, as most patients stayed the same or worsened, it definately contradicts what Dr. Trussel told me as he claims 50% of patients see improvement after injections, I doubt he will have any data though to back up his claim if I pressed him.
ComeBackid
check the link https://www.peyroniesforum.net/index.php/topic,119.0.html
Quote from: Hawk on May 10, 2006, 05:51:54 PM
I would suspect it would be very easy to apply iontophoresis preop, and take the tissue during surgery as was done with the topical varapamil study. I agree with you J. Any penile surgeon could do it, even a bad one. Again, it seems it would take no approval since they are cutting tissue anyway, so why are we discussing it when it could have been done years ago?
This point is a very good one, if any urologists really wanted to find out if TV worked or had a chance at working they would of done this. Seems like they are more concerned about doing surgeries.
ComeBackid
Tim.. thanks for the answer.. I would be very interested if you sourced another verapimnil formula. In the meantime, I will contact BIOMED again.. and get the skinny on their unit and the drug...
Keep up the good work..
Tim/DEcaptain--- are either of you usung a VED.. if so are you following the SOMA protocol?
Hopeful!
[
Hopeful,
No, I'm not using a VED. Sorry I can't be helpful there.
dcaptain
Quote from: Hawk on May 10, 2006, 05:51:54 PM
I would suspect it would be very easy to apply iontophoresis preop, and take the tissue during surgery as was done with the topical varapamil study. I agree with you J. Any penile surgeon could do it, even a bad one. Again, it seems it would take no approval since they are cutting tissue anyway, so why are we discussing it when it could have been done years ago?
I remember reading something about the effectiveness of Verapamil getting into the tissue using Ionto, and found the following in an article on 'Peyronie Disease' on emedicine:
Martin et al investigated the use of transdermal verapamil without EMDA to see if the substance would be absorbed through the skin. A commercially available preparation of verapamil gel (0.5 mL, 40 mg/mL) was applied to the penises of men scheduled for penile implantation on the night before and the morning of their surgery. The level of verapamil was measured in the urine and the tunica. No adverse effects were noted. Although small levels of verapamil were identified in the urine (signifying a low level of systemic absorption), none was identified in the tunical tissue. These authors concluded that no rationale supports the topical use of verapamil for Peyronies Disease. This finding may not apply to other topical verapamil preparations; however, the authors make a strong case against the use of topically applied verapamil without EMDA.
In 2003, Levine et al reported on the use of EMDA to transport verapamil into the tunica albuginea. This noncontrolled, nonrandomized, single-blinded study used either verapamil at 10 mg alone or verapamil with epinephrine for 20 minutes in men with Peyronies Disease who then immediately underwent plaque excision. The levels of verapamil in the excised tunica were compared with levels in the tunica from men who either had no treatment or who had intralesional injection of verapamil. These authors found detectable levels of verapamil in 10 (71.5%) of 14 men treated with topical verapamil with EMDA. They found EMDA to be a safe technique that is capable of transporting verapamil into the tunica. Epinephrine, which was used to decrease vascular dispersion, did not increase tunical concentrations. This study did not address the question of whether the verapamil helps the Peyronies Disease at these levels.
I also found a reference:
Recently it
was reported that TEA of verapamil into the
tunica albuginea provides measurable drug
levels in plaque tissue [13].
13 Levine LA, Estrada CR, Shou W, Cole A.
Tunica albuginea tissue analysis following
electro-motive drug administration.
J Urol
2002;
167
(Suppl.): 205–6, A828
I've got both documents saved on my computer if anyone would like copies.
Steve
Hawk,
:o Wow :o! I certainly expected to see some more poisitive results from the VI survey! As you said, it isn't a randomized study of a large number of VI patients, only who are still active in the forum, but still, it's very interesting. I'm going to take it to my Uro next week and see if he comments on it.
Steve
Steve,
I think this is the same study I referred to that tested topical verapamil but not iontophoresis.
Would you check that out and if that is the case let us know.
An aspect of the TV discussion bothers me, and that is the lack of precision in what is being talked about.
Topical application of medicine is as old as the hills: there's nothing patentable about it. Thus if you asked a pharmacist to make up a topical verapamil, he would supply verapamil in a neutral base, which you would apply as a topical ointment. The problem is that there is no reason to believe that verapamil will travel inwards any further than the surface of the skin.
The other is a transdermal verapamil, where the verapamil is mixed in a transdermal carrier, which carries it through the skin and into the plaque.
PDLabs has a patent on a transdermal verapamil, but as I read the patent it claims protection for verapamil in a specific carrier. Thus it might be possible to have a different transdermal verapamil in a different transdermal carrier not patented by PDL (eg V + DMSO ?). PDL has produced evidence that their transdermal verapamil works: there is no evidence that plain ordinary topical verapamil would work.
PDL has helped cause the confusion, because their patent starts by claiming rights in a transdermal verapamil, but as you read through the patent, this later gets described as 'topical verapamil'. Then later there is a public letter claiming that PDL owns the rights to 'topical verapamil', and threatens action against anyone sle supplying it. In fact they own the rights to a particular transdermal verapamil. The plus for PDL is that verapamil is a potentially dangerous drug in the bloodstream - it reduces blood pressure. The research that PDL quotes shows that their transdermal verapamil is relatively safe: If you mixed up your own transdermal verapamil, or a pharmacist mixed it for you, you don't know if it would go as far as the plaque, or overshoot into the blood stream and with what consequences.
So these two verapamils cause confusion. I have seen a poster say there is no need to go to PDL because his pharmacist will make up a 'topical verapamil' for a lot less. But is it transdermal, or just topical? Similarly people have reported getting a prescription from their uro for topical verapamil. Did he mean transdermal verapamil ? And is that what was prescribed?
Similarly, when Martin and Levine, as Steve's post below, can find no signs of it in excised tissue after applying 'topical verapamil', was it topical or transdermal?
So when we have posts referring to TV or topical verapamil, are we referring to transdermal verapamil (which might work) or plain topical verapamil (which probably wont).? If it came from PDL or Talon, it is probably transdermal, if it came from somewhere else it probably is not: I can't see a reputable pharmacist copying the PDL patent - the profit would not even pay for the cost of replying to the PDL lawyer - but he might put verapamil in a different transdermal carrier, if he recognised the difference between topical and transdermal.
So when posters say that TV did not work for them, depending on what they used, that result might not be surprising.
It would be interesting to know from the members of this forum who have reported disappointing results with TV, if they know whether they were using a transdermal or a topical verapamil.
I know of no data to support the notion that PDL has a special proprietary formula that promotes movement of verapamil into tissue. They simply have a patent on the very idea itself, it seems. This unfortunately stifles research int the truthfulness of their claims.
Tim
Ok its been about 3 and 1/2 weeks now, still no visible results from religiously applying Topical Verapamil. Tim is right their patent prevents any pharmacist from creating a "topical verapamil," and experimenting with application agents in the gel because anyone who does this is then threatened with a civil suit for even attempting to make anything. My old pharmacist who made me verapamil for $99 experimented with different application gels, he also said after calling other pharmacists he knew what PDL's formula was and that in reality, they were charging way to much for their product, he said to make what they make costs only about $45, which means off of each tube, they make $210. Assuming they keep patients on the medicine for 3 months this results in $630 profit.
ComeBackid
For anyone trying IONO get the IOMED pads, they are like a bandaid with a middle party that you can drop the liquid medicine into and then wrap it around your penis like a bandaid, it works a lot better than the cups that come with the PHYSION system, I was on the phone today with the PHYSION people and told them about it, the guy said at the convention or meeting in two weeks they are bringing over some engineers to create better pads similar to IOMED. The treatment today was my first and caused me no pain, but a very light shock(more of a slight burning, like when you put on aftershave) but it is nothing to worry about, and it comes on the pad on your thigh no your penis so that is good. I'll keep everyone posted on any results I see.
ComeBackid
Here's a link to Easterling's patent application. It's a long link and if it doesn't work, just search for US Patent 6353028.
http://patft1.uspto.gov/netacgi/nph-Parser?Sect1=PTO1&Sect2=HITOFF&d=PALL&p=1&u=%2Fnetahtml%2FPTO%2Fsrchnum.htm&r=1&f=G&l=50&s1=6353028.PN.&OS=PN/6353028&RS=PN/6353028
The patent application apparently gives all the details of what's in PDL's product and how to combine them. I don't have the technical knowledge to say whether there's anything unique or original in this formula. I don't see any reference to research done by Easterling. Although Easterling claims that his formula "has repeatably effected, in many cases, a complete reversal of perceptible Peyronie's disease symptoms, and in all cases, a substantial reduction of such symptoms", no evidence is offered. Apparently that's not required for a patent application.
The application makes the standard claims to a "novel and unobvious" idea but it's not clear to me what that is. I don't think Easterling discovered, on his own, that calcium channel blockers stimulate collagenase production. He seems to have learned about that and had the thought that some fibrotic conditions might respond to a topical or transdermal application of verapamil, then gotten a patent on that idea.
ComeBackid,
Do you have a link to these IOMED pads? Also, would they work with the Physion system?
Thanks in advance!
dcaptain
Dcaptain,
http://www.iomed.com/
I don't see why not, Tim is also using them with his PHYSION system, the current doesnt change, and if you try IONO you want the POSITIVE polarity, red clip on penis patch, black clip on thigh. I guess I'm going to find out if this works or not over the next couple of weeks.
ComeBackid
I am new to this forum and thought I would "check in". I am 57. I developed Peyronies Disease over the last year. After a little research, I sought our Dr. Rajfer at UCLA -- he offered me the option of trying 6 bi-weekly VI treatments while taking 10 mg of Cialis, 1200 mg of Pentoxifylline and 1 g of L-Arginine daily. His assessment was that 30% of his patients experienced improvement from this treatment. I elected to try the VI treatments, which I just completed. Unfortunately, I experience no noticeable benefit. I asked him about surgery. He explained the following to me: in 90% of surgical cases, the penis can be straightened, but that 30% of patients complain that their penises are shortened, 30% experience a change in sensation, and 30% experience some form of ED.
I discovered this forum while searching the web for alternatives to surgery before deciding to undertake the expense and risk involved. It would appear that in my circumstances, the cost of the surgery would be in the neighborhood of $3,000 out of my pocket, and the risks give me pause. On the other hand, even though I am divorced and not currently in a relationship, I have the desire to do whatever I can to lean into life and deal with this as effectively as I can, rather than surrender to my condition. Any thoughts or suggestions are welcomed.
Welcome Topanga,
You aren't alone. Many if not most of us have experienced or are going through all of the same as yourself. Questioning. Research. Emotions. What does make it better, or at least easier to deal with is the fact that we aren't alone. Contribute often. It benefits us all.
SteveW.
welcome topanga
Iam a newbie too. And less qualified than the other members to suggest anything. But I do feel surgery and even drugs should not be an option untill 'the first do no harm approach' is given a chance. I feel a disturbing percentage of doctors fail to recognize, the difference. I've read good posts about Alc,ionto,arginine,and topical verapamil worked for kimo.And vitamin E along with other supplements that work for what is probaly an autoimmune angle,like VitaminD,coq10,omega three- fatsoluble free radical scavengers and good fats.
I have a bit of a complex situation I've a problem with kidney stones,besides Peyronies Disease
both mild cases (and a vitamin D deficiency, would like some clarity on this ) Iam told vitamin D is good for Peyronies Disease and prostate, but aggravates kidney stones - Iam sorry that my posts tend not to fit into the topic,they keep overlapping!
Welcome Topanga,
First off, it sounds like you have a urologist who is willing to give multiple treatments that might work, and is not rushing to sell you on surgery - both good things. I too would caution against surgery too early in the course of Peyronies Disease, and it is arguable that one year in is too soon for that. Also, if you can still physically have intercourse, I would hold off on a surgery. I figure a bent erection and a normal orgasm are better than a straighter erection and no sensation (or even no erection)!
Some might argue that more L-carnitine would be appropriate (ie 2-3 gm per day). This is simply one of many areas in Peyronies Disease care where no one seems to really know what is "best". Hang in there and thanks for posting!
Tim
Attached are some very interesting results from our monitored member ILV survey. While the numbers are small, the survey was protected from false entries and reflects accurate information within its limitations.
While this may not surprise some, it makes an impact when you see it in print from our members.i
A big thanks to all that participated. I have now made the survey public on our website. If you took the survey once, please don't take it again.
Just click on the attachment to enlarge the resusts of the ILV Survey
Judging from the updated survey results in the previous post, either our members are the most unlucky Peyronies Disease patients around or ILV leaves a lot to be desired.
I think I would have to conclude that either ILV does nothing outside of the statistical range of natural progression, or that it improves some but makes a greater number of men worse off.
keep in mind that maybe only the disgruntled took the survey, or maybe men that greatly improved are gone from Peyronie's Disease forums. As a personal opinion, I find both of these explainations very unlikely. I never heard of any member that ever said they saw a single post suggesting, "ILV completely fixed my penis! I am out of here!"
I guess I am one of the fortunate ones. VI certainly didn't hurt (other than the pain of a needle jammed into little Steve every other week for almost 4 months) me; but other than maybe a 10% improvement in my "bend"...nothing was accomplished. BUT, if research and case studies indicated that 142 further injections would cure me, would I do it? Yes.
Amen to that SteveW--if another 150 shots would do the trick, I'd be right behind you to sign up! I just finished my 12 shots with the only result being a nasty bruise (again). I'm now trying the VED route as my Uro says the next step is surgery--I'm definately not ready for that step yet!
Steve
Quote from: SteveW on May 17, 2006, 11:33:21 PM
I guess I am one of the fortunate ones... but other than maybe a 10% improvement in my "bend"...nothing was accomplished.
Well Steve, if we split hairs, as far as our member survey is concerned, you were
one of the fortunate one
s ;)
This of course raises the question of whether the you improved because of the Verapamil or in spite of it.
Quote from: Hawk on May 18, 2006, 08:38:50 AM
This of course raises the question of whether the you improved because of the Verapamil or in spite of it.
Don't I wish I could answer that question. But, I do know that since halting injections there has been no further improvement. Or worsening, thankfully.
However...I am having twinges (aching?) of pain again when erect, which are worse some times than others.
Crap.
I am wrapping up a series of iontophoretic applications of verapamil, and thought I would give an update. I am a personally perfect example of why anecdotal medicine is so limited in helping us forge an understanding of physiology - and yet we naturally try to figure out what happens to us, and why. So far, theresults are disappointing.
I used the Physion "Mini-Physionizer", which applies a 4 mAmp current for 20 minutes, with a "ramp-up" to full power over the first minute or so. I used their cup system that is designed to hold 5 mL, although it is impossible to get 5 mL into it, as the level of the injection port determines the "high water mark" for what is injected into the cup (see the company's illustration -somewhat helpful). At any rate, I used their suggested strength of 10 mg Verapamil in 4 mL (2.5 mg/mL strength) mixed with 8 mg of dexamethasone (AKA Decadron) in 1 ml, for a total volume of 5 mL. Again, I usually got about 3.5 mL into the cup, so the total available dose of verapamil was about 6-7 mg. (http://www.physion.com/peyronie_edu/images/Step-4.jpg).
I applied the treatments three times a week, although I fell to about 5 times every two weeks for the last 2 weeks. The results are disappointing; I see no change in anything, although I feel that the fibrotic cord that runs along the dorsum of my penis is "softer". This is a very subjective finding, though. Also, the problem that prompted me to kick into higher gear was the appearance a few months ago of a 1 X 1 cm "dent" at the left base of my penis that causes a leftward lean, and the treatment did not really sit over that portion of my penis. It thus felt as if I was treating the "wrong" area. Moreover, about 3 weeks ago, I suffered a trauma of sorts during intercourse, with an acute bend to my penis when it "caught" as I pulled out and went back into my partner, and it bent acutely dorsally right below the head. That area *hurt* and subsequently has become slightly bent also. I applied the remaining treatments I had to that area, as best I could (although its lateral placement also made use of the Physion cups awkward).
So, some thoughts. First, I had to keep telling myself that longstanding lesions are known to be harder to "fix", and the literature supports that; men with recent onset were and are easier to fix than those with longstanding disease. So the fibrotic cord along the dorsum of my penis - there for over 30 years - should be hard to get rid of!
Second, I believe, but cannot prove it, that the treatments actually arrested the development of a new area of pathology where the trauma was. Of course, without a couple of dozen of me, it's hard to do a real randomized experiment! But the new problem stopped progressing when I started treatments. There is no way of knowing what would have happened without treatments, though.
My plan now is to try the following. I am going to use the more flexible IOMED dispersal patches, and am going to try to see if there is a little bit of reverse engineering that might make "homemade" application patches more affordable. Secondly, I am going to use a 20 mg/mL solution of verapamil that I had a compounding pharmacy make for me (100 mL for $18!). It's pH will be 5.7 (should not be irritating to the skin), and I will be able to put a dose of about 40 mg in 2 mL onto a smaller patch, that can be placed right over the area of concern. I will use the Mini-Physionizer to deliver the drug, but for good measure I am going to see if the output is what it claims to be (shouldn't be too hard to do in my workshop) :) Finally, I am going to measure the pre and post iontophoresis drug levels in the fluid to see how much is left over - that seems it would be a good measure of how much went into the tissue.
I will of course keep everyone posted as to results.
Tim
After about 5 years of reading everything I can find about Peyronies Disease on the net, and digesting every posted experience - oh and did I mention dropping a couple thousand on transdermal verapamil - my totally unscientific, highly emotionally biased conclusion is this: I don't believe that verapamil, in any form, has any effect at all. The small number of positive reports includes nothing but spontaneous remissions, mis-diagnoses, placebo effect and poor measurements.
I think that IF we saw some convincing study data - actual lab work - showing a real effect in the tissue of actual Peyronies Disease patients, THEN it would make sense to spend more time, energy and money in developing various ways to deliver the drug.
But it seems to me that the supposed positive effect of verapamil in actual human tissue has been largely inferred from a bunch of poorly constructed studies on patients, rather that being proven up front by solid lab work.
And of course, I'd be very happy to be proven wrong.
Tim,
Way to go to bat for us sufferers, it will be interesting to see what you measure after the treatments, this way we can tell if the drug actually makes it in.
ComeBackid
Tim,
Are you going to use dexamethasone also? And will you connect positive or negative to the active pad/cup? Did you try reversing the polarity in you earlier ionto treatment?
Phil,
Tim is using the PHYSION protocol of verapamil and dexamethasome, he also uses the positive charge as what I'm using to drive in the medicine, which is red cable on penis, and black on the thigh.
Its good we have an MD like Tim who can do these tests and get more information for all of us.
Phil how is your IONO treatment coming along or did you stop for awhile?
ComeBackid
Regarding J's comment about Verapamil being overestimated:
In the November 2003 edition of "Ask The Doctors" page (at the PeyroniesAssociation.org), Dr. Levine writes:
"...The Physion Company of Italy now has FDA approval in the U.S.A. for their iontophoresis (EWDA) delivery system for verapamil. About 50% of my patients have demonstrated improvement when using verapamil solution or even saline alone. Prior research has suggested that electric current may in fact activate the healing process, which may explain why some men with saline respond to this treatment. Further research is ongoing regarding this phenomenon. ..."
So Verapamil has at times been no more effective than a salt solution, and even those benefits may have been due more to some aspect of the procedure than the substance used.
I have tried reversing polarity (that is, doing first one, then the other charge). Each takes 20 minutes so it is a large commitment of time. I do it in bed, late at night, and have fallen asleep doing it - thank goodness the machine turns off automatically!
The verapamil is charged, and I think that adding decadron will only hamper administration. Although I am interested in what a steroid might do to reduce inflammation, a fairly long history of failed therapies with steroids (creams, oral, IV, IM and injected into plaque) make me less interested in adding that.
Tim
Update:
So far I'm about halfway through my IONO treatments, I've been running the positive charge for twenty minutes, then reversing and running the negative charge immediately after. I've been using the IOMED pads and have been using 2.5 CC's of verapamil and .5 CC's of decadron, since the IOMED patches can only hold about 3.0 CC's of liquid total.
I've also been taking 800 IU's of vitamin E, about 2 grams of Aceytl L Cartinine with lipoic acid, Topical verapamil 2 times per day, and MSM about 3,000 grams or 3 pills per day.
The only thing I've noticed so far after about 45 days or so is more firmer erections and increased bloodflow in the flaccid state making it hang bigger, I believe this is related directly to the topical verapamil. Also initial pain I had is now gone, studies show the Carnitine could be the factor reducing the pain.
ComeBackid
ComeBackid/Tim,
Sorry I've been w/o computer for awhile. I am still doing ionto and should finish treatment next week. It seems to have helped a bit. Time will tell. I've also been soaking in a warm bath every few nights. I use a pool thermometer, keeping water aroung 104. Good luck with your treatments.
Phil
Hi Everyone... I just wanted to introduce myself and get into some discussions. I first discover I had Peyronies Disease about 10 months ago. The first 2 months I ignored it and did not really know about Peyronies Disease. After 2 months I decided to go to the urologist. He told my about Peyronies Disease but was not sure if I had it at this time and he said to give it time. I still was not convinced that I had Peyronies Disease until about 8 months went by and things were not getting any better. I went back to the uro and he recommended Topical Verapamil. I have been on TV for about 2 months now and it seems to be helping. The pain is still there but not as much and there has been no change in curvature (about 25 Deg to the left). I have 2 areas that are infected one about the size of a pea (center) and another about the size of a (3/8 inch long flat) near the bottom of the Gland. They also seem to be getting smaller and not as hard. I was thinking about trying the L-Caritine and L-Arinine along with the TV just to give myself a better fighting (Hence Fighter) chance. Any suggestions on this thought?
Hello Fighter. And Welcome to probably the best forum I personally have found. There seems to be alot of intelligent, caring men here with knowledge about the different treatments and options for Peyronies Disease. I also have been prescribed Transdermal Verapamil as well. Although you will hear others say that they had no success with it, I have read maybe a couple guys that seem to have had a little success with it. Just read past posts and you will find a wealth of info on options.I think roadblock just posted his regimen under his Peyronies Disease update. Pentox is one med I keep hearing about. Perhaps Hawk or someone that's been here longer can guide you. Stay positive and don't give up hope. Again, welcome--Zig the Twig
Hello Everyone!
I wanted to inform all members and guests of this site about an upcoming educational presentation that will take place in Chicago on Wednesday, July 26th, 2006 at 6:00 p.m. "Straight Talk about Peyronie's Disease and ED" will be presented by Dr. Laurence Levine @ Rush University Medical Center. All interested parties should RSVP to Trent @ 1-800-525-8773 ext 5725. Thank you and I hope you can attend!
Thanks tmenor!
I sure hope someone thinks to record this event and make it available to all those of us who can't travel to the Windy City. It sounds like an informative event...anyone interested???
Welcome Fighter !
I think you will find a group of caring and giving men here. We're all in this together and I have received a great deal of support and information from my fellow members. Don't hesitate to ask, question or post. Good luck, we all need to hear about your progress.
Guys wasn't sure where to post this. But is this something different than the iontophoresis(spelling?) If so, is there any posts on this in this forum? Otherwise, give me a quick briefing of what this is and any success?
Thanks
Zig the Twig ???
Zig,
If you click on our forum "Search" and type "interferon" you will get several hits.
Does insurance cover Verapamil and IONO treatment? If not, how much are we talking?
Liam
Liam,
My insurance only covers $94 for every $270 tube of topical verapamil, and the last one they denied saying I didn't have the right NDC number and quantity when i did, they are just delaying paying out(its cheap MEDCO). Most insurance companies do pay the full price of topical verapamil from PDLabs.
I haven't tried to get the IONO covered yet but the machine with drugs is about $1200. I'm going to try and get this covered next, I'll let you know how I make out.
ComeBackid
Thanks, It is always good to have the numbers.
ComeBackid,
Please let us know how IONO treatment is addressed and covered by your insurance Co. My plan did cover TV for the usual formulary copay of $30...but IONO may be another question. Good luck.
Need some opinions???
I am at the end of my 3 months with TV from PDLabs and I do see some improvements like pain is tolerable now no change in curve and the plaque seems to be improving but that is day to day meaning some days feels better than others. This all could be from Peyronies Disease running it's course?? Not sure?? but on one hand I feel like if I don't do at least 6 months treatment that I did not give PDLabs a fair shake because they do specify at least 6 months. But on the other hand after reading the form and indulging all the facts and informations I feel PDLabs are scamming us and I personally sent them an e-mail of ComeBackid's report and asked them to get back to me and they never did. So I kind of think that they scamming us? Not sure? Any opinions? I will appreciate and value your opinions but ultimately I will make the decision if I am going to do another 3 month treatment.
Fighter,
This probably won't be what you want, but here it goes.
I think those are the tough decisions that only the patient can make. You have talked to others and read posts of those that have been through the PDLab's routine. You read ComeBackid's report. You have heard PDLab's claims. You know your financial situation. You also understand that pain always goes away. You know what other treatments you are trying. You may not know that plaque almost always goes through changes as it matures (it often shrinks). You have seen the changes in your own symptoms. We can be pretty certain that TV does no harm.
To complicate the issue, more than does it ever work, the question is "does it work better than another treatment and where will I put my money. For instance, Ionto, traction, VED etc.
There are hundreds of members here with opinions on TV generally and PDLabs specifically. Some have used it and some haven't. My point is that when you stop and think, you probably already know every argument that either side can use. I am sure some will share their opinion and tell you what you already know, but in the end, the tough decision remains yours. Most of us struggle with these same type of decisions even after we have all the data.
Good luck my friend!
My symptoms became worse while on topical verapamil. MUCH WORSE. It was a horrible mistake on my part to try TV. The first urologist I went to brought up the subject of TV and emphasized to me that it absolutely did not work. I did not listen to him and went to urologist number 2. He said his patients have had good success with it. After he saw my condition worsen even with a double dose he said he had no other treatments to offer me. I asked about verapami injections. He said they do not work. If he thinks injections don't work how could topical possibly work? Prior to my use of TV I had used topical magnesium sulfate with some success. I did not use magnesium sulfate cream while on TV. After starting up using MS again a slow improvement began. It is NOT a cure however it has absolutely helped me with the "hinge effect" and dents on the left and right side. The dents on the right side are gone. This progress has been very slow taking many many months. MS is very inexpensive and I think worth a try. It is a natural calcium channel blocker. It isn't promoted; there's no big bucks to be made by selling it. I am talking about the topical form of epsom salt. I have only been able to find one source. My Peyronies Disease is still quite active. I had a mild case of Peyronies Disease prior to bilateral hernia surgery. After the surgery a 5 degree curvature to the left went to 30 degrees. It is now zero degrees. While that left side curvature resolved itself a new curvature towards belly started. It's about 30 degrees. The last month on TV my rigidity was about 75% of normal & now its about 95%. All of our situations are different and I just hope some of what I have said is helpful to somebody.
Mark501,
The real question is, is your second urologist a liar and scam artist, or just crazy, this crap doesn't work!
ComeBackid
Liam,
Quote from: Liam on June 14, 2006, 10:50:09 PM
Thanks, It is always good to have the numbers.
I thought that you might be interested in another insurance perspective and an opinion from another member.
I have had Peyronies Disease for 12 years,during the 5th year a urologist gave me an RX for topical verapamil from PDL. I am insured with Blue Cross and Blue Shield of Texas...... they were willing to pay the whole bill for TV but I had to lay out the money and they would re-inburse me after filing the proper paperwork.
Money was not an issue, I did not however follow through with filling the RX simply because there was very little positive information on the forums and hardly any efficacious posts. PDL had not written any reviews inspiring me to use their product.Basically it was a "take our word for it" deal doing business with them. I have not yet found any remotely convincing evidence that TV was or is worth my time. 8 years later I still harbor the same feelings.
If TV had the efficacy that it claims then the AMA,AUA or some credible organization would be telling us to use this product.
Just an opinion from an old timer who has seen and heard all the BS.
Regards,
Barry
I agree with everything that Hawk said. I have been on TV now since Feb. 700+ dollars out of pocket. Pain went away almost immediately. Penis hangs a little bigger in the flacid state, however, plaque has recently started to grow bigger, nothing else promising. If I had to do it all over, I would have saved my money, started an alternative regimen with pentox, arginine,etc., a VED or traction device and the rest on Vegas.Just my 2 cents.
Zig the Twig
Thanks guys! I think the only TV I will use is the one I sit in front of.
MArk- I read your post- and I am interested in finding out more about topical magnesium sulfate -(eposom salts) Please post the site- where you can find it- and how often do you apply- do you use a VED?- if so how ofthen- it sopunds like you have had good success with this so far- as far as curvature, etc..
Thanks,
Hopeful
ANYONE!!!
What dose Dr. Levine say about TV? He seems to be big on injections... has he done any work with TV???
Dr. Levine says TV is worthless and a waste of time and money. I asked about it several visits ago and he told me to save my money...he's not real big on snake oil treatments. He performs the VI but admits that it may or may not help. The data he provided to me (if I recall correctly) indicated about 45% improve, 35% show little effect, and the balance continue to worsen. I opted for the shots. Two visits ago he put me on Pentox and arginine...that does seem to be helping...I am also using traction and have had about a 20 degree improvement in curvature (45 degrees - 25 degrees) over the last 5 weeks...I'm very encouraged.
WAntitstr8,
That is the best news I've heard in a while. I am encouraged.
Liam
Been using the TV from PDLabs for over two months now, like week 9 or 10, the whole time I"ve been using a little extra each dosage to! The only thing it will do is increase bloodflow and give u better erections, plaque is still there and unchanged really, the crap wil not dissolve the plaque, it is snake oil. If you guys get a chance check out my PDLabs report, J also helped me with it. When the TV survey comes out if you used TV from PDLabs or generic TV make sure you take the poll so we can get the facts out on PDLabs and TV as a treatment!
ComeBackid
Is anyone besides Tim and I currently using this treatment device for peyronies?
Any results to report if anyone is using this machine?
ComeBackid
Perhaps Want It, could tell us what Dr. Levine thinks, but I believe he thinks that it doesn't work and doesn't prescribe it, considering his colleague Dr. Mulhall wrote a paper on how topical verapamil doesn't work. Check out my report on topical verapamil and PDLabs. Fighter the TV did nothing for you... right?
At my first visit with Dr.Levine, we reviewed the options. He said I could take Vitamin E, which probably wouldn't do any good. He also said there are a myriad of topical solutions and applications that are all worthless, any anecdotal benefit is likely due to a spontaneous resolution of the problem. He explained the potential benefits of Verapamil injections (which I opted for), and offerred the traction procedure (as a participant in the study) as an alternative. I declined the traction at the outset...have since begun a traction program on my own. Basically, Levine thinks topical solutions have little if any benefit.
Did he have a opinion on VED?
Rico
Yes, he prescribes the Somacorrect VED in conjunction with the Verapamil Injections. It seems he is leaning toward a method of reducing the deposition of collagen and then a physical modification of the scar tissue itself. After little results from the VI, he then prescribed Pentox and Arginine and suggested I continue with the traction program. So far (about 6 weeks into the process) I have seen about 20 degree reduction in curvature.
Want It,
Is the idea that pentox itself will break downt he plaque, or that it will increase bloodflow which will help heal the plaque, or doesn't he know?
Also how much does pentox cost monthly, does insurance cover it?
Dr. Carroll from Orlando, Florida told me Dr. Levine prescribes the IONOtophoresis machine in conjunction with a Soma Correct VED, he said you must first soften the plaque, before you can "remold" it.
ComeBackid
Rico,
The Old man does call for the VED, using it slowly over time to stretch the scar tissue. However, he has stated you can achieve positive results with the VED only. The thing that caught my attention from Dr. Carroll, was that he told me you must first soften the tissue through IONOtophoresis, then remold it using the VED. What exactly does remold mean, I don't even think he knows! He sent me the VEd along with the IONO with no instructions on how to use the VED, I've taken up the 26 week protocol from Old Man. Dr. Carrol said that if you just use the VED you will make your curve worse, he said you have to soften the plaque before you can straighten in. He told me hes had several patients come into his office, with a worse curve than before they started VED treatment, because they only used the VED. His statement conflicts directly with Old Man's, who says you just do the 26 week protocol. I'm doing the IONO treatments because I have it, and it can't hurt to do that with the protocol. There are some on here who have claimed to regained lost size, I wouldn't call this remolding, I'd call it stretching the plaque out. I don't think anyone knows the exact science of this at all. Dr. Levine is currently doing a study with traction devices, and I think it will be very interesting to see the results of this.
*On another note, I noticed that the traction device companies claim you can straighten your penis if you have peyronies and restore lost size, but they claim you can gain size if you don't have peyronies. Augusta Medical Systems claims you can use their VED for impotence, and to straighten the plaque out if you have peyronies and restore lost size, however, they don't claim someone without peyronies can use a VED for enlargment. I am very skeptical of contraptions that claim they can enlarge the penis in one without peyronies, cause there is no plaque to stretch.
Just a thought... ??? if the VED/Traction devices 'stretch' the plaque, then wouldn't the curve 'reverse' in the flaccid state? To my thinking, if you take an upward bend (for example) and stretch the plaque so that when erect the penis is straight, then wouldn't you have a downward bend when flaccid due to the 'longer' plaque?
Just wondering...
Steve
The bend happens during erection, and then bends oppositite of plaque. So more supple plaque is,the less of bend.
Rico
Regarding Iontophoresis: In a man who is not circumcised should the pad be put on the foreskin or directly on the penis? To me it makes sense to put it on the penis while my husband says the foreskin should be fine.
My thought is that the medicines will more likely reach the affected area rather than be caught up in the foreskin. Granted it would be difficult to retract the foreskin in the area, but I can see that it is doable.
BLBC,
I've been using the IONO and am uncircumcised myself. Whether your cut or uncut, really has no bearing on doing the treatments. You wouldn't want the pad on your foreskin, as their is not plaque there, the plaque developes in the shaft for most people. I just pull the foreskin forward and put the pad around it, if your using the cups from PHYSION, they are terrible on any penis, look at IOMED pads, thats what I use and the physician Tim whos doing IONO uses as well. They are flexible bandaid like pads that wrap around the penis and are much easier for administration. You will definately want to shave the pubes, and surrounding ares of hair, as the pades have a sticky bottom like a normal bandaid and u will be pulling out chunks of hair if u don't shave around the pubic, and penis area. So once again your husband shoudl not put the pad on his foreskin, but pull it forward over the head then put the pad over wherever the pad is. The medicine is driven in where the pad is, you can't drive it in to one part of the penis and let it migrate to another part, this will not happen. Hope this helps if you have anymore questions feel free to PM me. Also with the IONotophoresis, I"m using 20mg/ per mL of verapamil and not using the decadron, you want to use the positive charge or the red alligator clip on the penis, and the black on the thigh. Any questions feel free to PM me.
ComeBackid
Disclaimer: If this makes no sense it's because I don't own, nor have I ever owned a penis.
I am really not understanding what your saying..... First you say do not put the pad on the foreskin then you say pull the foreskin forward.... Are you saying to retract the foreskin (pulling it close to the body) and put the pad on the penis? Or are you saying pull the foreskin tightly over the head of the penis and put the pad on the foreskin?
I have visions of the "Who's on first routine..."
My husbands plaque is about 1 inch below the base of the head on both sides of the upper portion when flaccid Considering the foreskin is attached to the head of his penis in this area should he pull the foreskin towards his body and place the pad over the foreskin where it is attached and the rest of the pad directly on his penis?
Which ever the case I think I'll introduce him to Veet as the shaving was a disaster!
BLBC,
See my PM I sent you. You want to pull the foreskin away from the body, so the skin around the shaft of the penis becomes flat and straight, and you can wrap the band aid like pad wherever you want it. Its very simple really, even if the plaque is an inch below the head just put the pad around that area. Once again, the PHYSION cups are almost impossible to use on any penis cause you must maintain an erection for about twenty minutes with an electrical current running through your body, and you can't move the cup at all you must stay still, besides this the cup does not seal well tot he penis and the liquid leaks out the sides, its a disaster, I tried for days and ruled it out as impossible. The IOMED pads work GREAT! They are not cheap but definately worth it.
IOMED Site (http://www.iomed.com/)
You want the TransQ E pads, circular style, and medium size.
ComeBackid
Quote from: pudder135 on July 10, 2006, 03:28:32 AM
Perhaps Want It, could tell us what Dr. Levine thinks, but I believe he thinks that it doesn't work and doesn't prescribe it, considering his colleague Dr. Mulhall wrote a paper on how topical verapamil doesn't work. Check out my report on topical verapamil and PDLabs. Fighter the TV did nothing for you... right?
Sorry been on vacation... I really don't think it did anything? I have been off it for two weeks now and really have not seen any difference.
All,
I've been off-line for awhile. I tried 6 weeks of iontophoresis and it seemed to help reduce curvature slightly and allow some fullness to return. I may go back for some more. I have been thinking about an earlier post by Hawk wherein he discussed scars and methods to reduce scars. Some antibiotics, and some anti-inflammatory drugs like aspirin or ibuprofen were mentioned. Is anyone taking the anti-inflammatory drugs on a regular basis at a significant dosage? and if so, have you noticed an improvement? What about topical aspirin, like aspercreme? Can it penetrate, and if so how far? Some of us have plaques just under the skin. Will it help? Are there any risks?
Phil,
How many times per week did you go in for a treatment, once a week for six weeks?
Did they use just verapamil or dexamethasome as well?
Did they put the delivery patch or cup on the same exact spot every time or move it around slightly?
ComeBackid
ComeBackid,
I had treatments twice a week for 6 weeks. Used both dexamethasone and verapimil. Interestingly, the negative lead was attached to drive mostly the steriod into the tissue. Tried to keep over same location were the plaque could be felt. Used the iomed pad.
Phil
Phil,
Thats odd, I thought in the PHYSION study they used the red alligator clip or positive clip on the penis to drive the medicine in? I was worried I might be using the wrong charge, however Tim said he is using the positive charge as well, I'm only using verapamil, no dexamethasome right now, did your doctor ever use the positive lead?
ComeBackid
Hi All,
I came across this and while the evidence is anectodal, it seems that cocoa butter is very cheap and harmless. As such, I am going to add it to the mix and use with dmso to drive it into the scar tissue.
Cheers.
1)Scars: Several of us have used cooa butter to reduce the scar tissue, not the scar itself, just what is underneath.
Here is a story from Nancy:
When my daughter was 2 years old she had a hemangioma (the kind under the skin and not the strawberry mark kind on the surface.) It was in the inner corner of her eye and the incision was from the top of her eyebrow curved around the nose and down to the bottom of the eye.
I had a very good plastic surgeon do the work, but was advised that he would occasionally need to do more surgery as she grew because it would tighten and draw up. I bought cocoa butter and melted it and kept rubbing it into the scar for several more years and she never required anymore surgery, nor does anything show up except a very faint white line.
She is going to be 37 this month and I am so glad that she did not require these extra operations. Can't believe that when I had my surgery I forgot all about the cocoa butter and probably could have saved myself from the keloided scar. I did use Vit. E. but it did not help.
Here is Rae's story:
it has been pretty remarkable. The scar line where it extended into the axilla was a tight, hard line. Now it has softened so much that it doesn't pull taut when I raise my arm and the entire area feels soft and pliant. (She used the cocoa butter more than 4 years after the scar began forming).
Here is Ann's story:
I completely reduced underlying scar tissue in three months by applying cocoa butter on the scar site. It was amazing and painless. I had used both aloe and Vitamin E for a long time before that and on other scars with NO discernible effect. The scar still shows but it has NO scar tissue underneath.
http://www.annieappleseedproject.org/tipandtec.html
Soxfan,
How long have you been using dmso and what strength and have you anything else with it, castor oil, arnica oil, ect....or avc and have you use aloe with the dmso...Thank you...also, did dmso blister your skin?
Rico
Rico,
I use dmso, the 99.95 human grade version as part of the Thacker formula. I have never had any problems with burning or blistering. I also use it mixed with aloe vera and evening primrose oil, from gelcaps, as a way to massage my penis and warm up before my nightly VED treatment.
Cheers.
Are you doing the Old Man's protocol using a Soma Correct? HOw long did it take you before you saw any results if you saw any, and what where they? So are you using the thackers forumla of DMSO, castor oil, and apple cider vinegar?
ComeBackid
Today I had a phone conversation with Dr. Carrol from Orlando , Florida in regards to getting my Soma Correct covered by insurance. I specifically asked him about the Soma, and he said using it without first softening the plaque can and will make the curve worse, this seems to go against what some on this forum have said. He said you need to do 25 IONO treatments before you see a softening of the plaque. He also said Dr. Levine is using the traction device in a study without first softening the plaque and he is puzzled by this. Hopeful I already know what your going to say about Dr. Carrol when you read this ;)
ComeBackid
IMHO ;) Until there is clinical proof one way or the other, everyone (including doctors) is entitled to his opinion. Only goog clinical trials will prove what works and what doesn't (but, as I said, that's just my opinion.
Steve
ComeBackid:
The protocol for the Soma Correct is the 26 week one provided by the Augusta Medical Systems company. The regimen of exercises that were developed by my uro and me have not been posted on the forum. They are given mainly through emails and PMs when an individual desires to start using them. They were developed especially for the Osbon Esteem manual VED. On occadion they have been given over the phone too.
Old Man
Soxfan,
What is the protocol exactly for mixing up the thackers, I think it was Barry who said not to refigerate the mixture, but use it right away and throw away the excess?
ComeBackid
Quote from: pudder135 on July 25, 2006, 04:36:34 PM
Soxfan,
What is the protocol exactly for mixing up the thackers, I think it was Barry who said not to refigerate the mixture, but use it right away and throw away the excess?
ComeBackid
ComeBackid,
Firstly, I use the osbon model VED with the protocol that old man was kind enough to provide for me. I do feel that it is helping but it is a slow process.
As to the Thacker formula, I mix it using 7 teaspoons of 99.9% pure dmso+2 teaspoons of apple cider vinegar+1 teaspoon of castor oil. I put the mixture into a little bottle with an eye-dropper and apply the mixture to the gauze or flanell and then to my penis. I find that the mixture will keep for 3 or 4 days with no problem. Again, it is a slow process and it might take many months or a year but I feel that it has helped greatly.
Cheers.
Hello everyone,
I am 16 years old and have been diagnosed with peyronies about 3 months ago. I got it from
getting hurt during sex, and i have been a mess mentally ever since. I have no self-esteem and i cry alot. This kind of stuff isnt like me i am usually very active and happy but since i got hurt its hard to smile. I am on Topical Verapamil from Peyronies Disease labs, i have been using it twice a day for about a month, and i havnt missed one application. My peyronies seems to be getting worse though. I was just wondering if anyone has had any GOOD experiences with topical verapamil, and if not what has worked. I come from a very poor family who is doing all they can to help me but the amount of money we spend for TV is really hard on us. I just wanted to make sure it isnt for nothing. If anyone has completely resolved their peyronies and are still on this forum PLEASE let me know because i am willing to try anything. Thank you all for your help.
-Tyler
Tyler,
The company you are purchasing it from must be Prescription Dispensing Laboratories in San Antonio, Texas?
I've used their product for 3 months twice daily, and for the last three weeks doing 4 applications daily, I saw absolutely no long term results. All the drug will do is make your nuts itch, and increase bloodflow while your on it, making your penis slightly bigger, and giving you the impression the plaque is changing when it really isnt. The stuff is expensive I sure hope your insurance is covering it. Countless people have PMed me telling me the stuff did not work for them, only one person Kimo, has said he saw results from TV from PDLabs that I know of. I've written a detailed report on TV from PDLabs, you might find it beneficial to read and analyze it, there are some very disturbing facts in it about PDLabs. I was flat out lied to on the phone several times from them, and they fail to present any new data that backs up the efficacy of their product which they said they have been gathering for years. If you click on the Peyronies Discussion Forum, and then go to the topic Report on PDLabs and TV you can scroll to the bottom to see my report.
ComeBackid
Quote from: pudder135 on July 26, 2006, 05:47:50 PM
Tyler,
The company you are purchasing it from must be Prescription Dispensing Laboratories in San Antonio, Texas?
ComeBackid
Yes, thats who im getting it from, i know what your saying about it makin your nuts itch and making it look bigger. How long was kimo doing it for? Did he just see some results or was his problem resolved? Do you know of anyone who has used anything that has worked for them? Thank you so much for your help.
Tyler
Tyler,
People have said the VED works, and IONOtophoresis as well. I'm on vitamin E, ALC, L Arginine, VED, and IONO treatments every other day. Different things work for different people. Just read around the forum a little when you get a chance, some people are now soaking in the bath with epsom salts, the stuff is cheap and you can buy it at a local pharmacy like CVS.
ComeBackid
Thank you so much for your quick responces. The people that have used IONOtophoresis have been completely resolved? I am looking into those, is everthing that you are doing helping at all? Do you know of anyone at all using anything that has gotten their penis completely back to normal?
JustLooking, Quick answer is no. The best honest answer I have ever heard from any treatment is improvement. Wish I had better news.
Tyler,
I don't notice any results from the IONO treatments yet, but I'm only halfway through the protocol and I've had my disease for 7 years so it might take a little longer time on the treatments. Most people that report results from anything just report improvements, no smoking gun cure yet.
ComeBackid
ComeBackid,
How long does the treatment go? Should i have better results because i have only had it for a few months? Have you had any good results form anything so far? Its hard to believe that there is no CURE for peyronies. It seems like one of these things would have had to had worked on someone. Has anyone heard of the disease correcting itself?, my plaque is also on the left side of my shaft so my bend is to the left. Should that be easier to resolve than if it was on the top or bottom? im sorry for all the questions but i would do anything to get it back to normal.
Thanks
Tyler
Tyler,
I have heard of this before. It is, however, unusual. I don't want you to disclose anything that you are not comfortable with. I would like to ask you some questions if you don't mind. Were you referred to a Urologist? Was that who prescribed topical verapamil? Are you taking anything else?
Good Luck
Liam
Tyler,
The IONO treatment protocol calls for 25 applications of verapamil and decadron, once every three days, some people do more if they have their own PHYSION units. For the people who don't have these, they have to go into see a doctor to get the treatments done, and they can't get in as much, so they may only end up doing one treatment a week. Phil has reported he saw moderate results using this treatment, so I have hope. A small percentage, maybe about 10% who get peyronies heal without any problems, but this is rare as you can see. I don't think any plaque is necessarily easy to resolve, no matter where its located, but its good you have indentified it. I would recommend getting in to see a good urologist, getting an ultrasound to indentify the plaque is a good idea, you may be able to tell if its calcified as well. Hang in there buddy, just stick to the treatments, I usually give a treatment at least 3 months before I get rid of it.
ComeBackid
Quote from: Liam on July 27, 2006, 02:01:22 AM
Just Looking,
I would like to ask you some questions if you don't mind. Were you referred to a Urologist? Was that who prescribed topical verapamil? Are you taking anything else?
Liam
Thank you both for your help. I am fine with answering any questions. Yes i was referred to a urologist about 3 weeks after it happened, he sent me directly to Peyronies Disease labs without even taking a MRI or Ultrasound. So, i have been on TV for about a month now, i think this is acctually only the third week. And, im not sure if it is because of the verapamil or just the disease progressing but i now have the "hourglass" and my curvature is alot worse. I am looking into getting an ultrasound, and i talk to a guy named John from Peyronies Disease labs, he seems nice and answers all my questions thoroughly. Here is a link he gave me. http://www.pdlabs.net/verapamil.html
Thanks for your help, and feel free to ask any questions
Tyler
Quote from: pudder135 on July 27, 2006, 03:54:45 AM
Tyler,
The IONO treatment protocol calls for 25 applications of verapamil and decadron, once every three days, some people do more if they have their own PHYSION units.
ComeBackid
25 every 3 days? how is that possible? Do they do multiple applications every session? What about this guy who just said he is almost fixed using CIpro? Any thoughts on that?
-Tyler
I think i am going to keep up the verapamil because i talked to a few guys that said they used it for six months and saw dramatic results. I am just going to add The L carnatine and Vit. E
Just Looking,
I think what ComeBackid was saying that there are a total of 25 applications, and they are spaced 1 application every 3 days, so you get 75 (or so) days to get the entire regimen of 25 applications. Yeah, 25 in one day would tend to wear you out :o!
Steve
Justlooking,
I think you have to go with your heart tells you, if you believe in it then you are half way there, the mind has a great play in healing. Remember also sometimes this goes away by itself, especially if you are young. If I was a young man with this condition I would put myself in the best shape possible for the next six months to give my body a chance to heal. Great diet, exercise, relaxing, sleeping well, ect....drink lots of water and juice, give your body a chance. If you believe in God, pray is powerful also, or nature. A day fishing or going for a walk and reading a good book. The problem many of us have in the being is to dwell on this and sit all cramped up on the computer looking for the magic pill, although being informed is good, it isn't the cure also. I really believe diet and exercise along with a couple supplements such as arginine will give you the best chance to a recovery, especially if you are young and do this from the beginning. Try a 30 day turn around on your life style, no junk food, cola, smokes, booze and late nights, start with a half gallon of distill water and fruits and veggies and lots of them for the first three of four days and then go to a balance diet, almost all raw food. I will write a diet for anyone who is interested in what I'm doing, I did my research on wound healing and tissue repair, pill popping won't do it alone, and remember you not what you eat, it is what you assimilate, you need to clean your self first with a fruit and veggies and water cleanse......keep positive brother, I believe you can beat this....I will say a pray for you....I try to say Ten Lord Prayers everynight for all my brothers in arms...God Bless You!
Rico
Steve,
That is exactly right! For people who don't have the PHYSION uint and go into the doctors office to recieve the treatments, I think they only get like one treatment per week, or twice a week at the max. If you have your own unit, you could give yourself daily treatments if you want! The IOMED pads are kind of expensive however, and because of this I can't do treatments every day.
JustLookingtobefixed, if you have any questions on the IONO feel free to PM me.
ComeBackid
Quote from: JustLookingToBFixed on July 27, 2006, 03:33:25 PM
I think i am going to keep up the verapamil because i talked to a few guys that said they used it for six months and saw dramatic results. I am just going to add The L carnatine and Vit. E
Tyler: I am VERY interested in who these individuals are that saw ANY positive results with TV. Are they on this forum? I can verify that no such individuals participated in our TV Survey.
PS: Tyler, since you use your name and since we have no Tylers, I can change your forum name to Tyler if you like. It may be easier for others to refer to. It is completely up to you.
Hawk,
I was just going to say the same thing, the only person I've talked to that has reported success from TV was Kimo. Tyler who reported they saw results from the TV? Did they say they got it from PDLabs or were they using the generic formula? Where they on here, BTC... somewhere else?
ComeBackid
Rico,
Thank you very much for that long reply, i would love to see the diet you are using and i will definatly use it, i am already a very health oriented person.
Hawk, Yes you can change my forum name, and no they were not on this forum but people that my urologist asked if i could call in my area. So i gave them a ring and i didnt get ahold of one but the other two said they have seen great results. One said he was on his 7th month and had almost completely fixed his curve but the plaque hadnt gone down much, and the other said that his plaque was almost all the way gone by his 4th month and that now he is just straightening out again.
I thought these were encouraging though.
Also, i went to Stanford for a second opinion and the uro their said that i didnt even have any scar tissue, and that the bump was where i tore something, and the dent/curve was probably a result of that. Personally i think its BS, but he put me on some asperin (spell check) type thing that i have to take 24 pills a day of and said with vit E in 3 months i will be back to normal. I am going to go somewhere that i can get an ultrasound to be sure, but he wouldnt do it.
Tyler,
If you have contact with these individuals you should give them the PDS web address and encourage them to logon. I am interested in their story.
Tyler,
Were the pills POTABA? That is a treatment for Peyronies Disease. That means even if the Uro was wrong and there really is scar tissue, he is treating you like you have Peyronies Disease.
I would not dismiss what the Uro said so quickly. In 3 months, you will know for sure. In the meantime take the meds, take the vitamin E and take the supplements for Peyronies Disease. They won't hurt if taken properly.
Good Luck!
Liam
I have recently ordered a Physion iono unit, and I am having problems with the wrong circuit light constantly staying on and my treatment not working. It will work every once in a while, but it seems if I move an inch the wrong circuit light comes on. Has anyone else had any problems with the wrong circuit light coming on a lot? Everything is hooked up in the right spot, I have double checked dozens of times. I will probably end up having to call the Dr.'s office, but I was just wondering if anyone else had this problem and if so what helped it.
Youngpain21,
Are you using the cups provided by PHYSION? These are extremely hard to administer... but they will tell you your doing something wrong. I couldn't even use them cause they leaked, I got the IOMED pads which are much easier! I'd highly recommend these pads, they are like a band aid you wrap around your penis. The cups are hard to administer, and the alligator teeth don't catch well on them. If you wan't more information let me know, feel free to PM me anytime.
ComeBackid
Quote from: Liam on July 30, 2006, 07:25:36 PM
Tyler,
Were the pills POTABA? That is a treatment for Peyronies Disease. That means even if the Uro was wrong and there really is scar tissue, he is treating you like you have Peyronies Disease.
I would not dismiss what the Uro said so quickly. In 3 months, you will know for sure. In the meantime take the meds, take the vitamin E and take the supplements for Peyronies Disease. They won't hurt if taken properly.
Good Luck!
Liam
Yep, i just got em for a whoppin $357.00 for 3 months worth. Has anybody seen anygood results using this? I am still using verapamil, taking 400iu of vit e morning and night and will start the potaba tomorrow morning. Does this seem light something good to do? The potaba cant make it worse in any way can it? Thank you for your help all.
-Tyler
I don't see how anything will hurt. The only exception is POTABA that may upset your stomach. This is only based on personal experience and what others have told me.
Liam
Dear Young Pain,
If the Physion suplpied cups are not filled up enough, then the fluid does not cover the electrode tip. This is hard to see, but requires that about 3-4 cc of fluid go into the cup before it is covered. The instructions should show a fairly good picture of it. You may be getting fluid to wick up the side of the needle as you inject it into the cup. Be certain to visually determine that the fluid is being delivered well enough.
I disagree with ComeBackid a little bit. If your penis is fat enough, it is fairly easy to get a good seal around the base, and if your lesion is on the dorsum of the penis, then you should be able to target it well. However, if you are tending to "shrink" a bit right now to a smaller size (and many of us, faced with placing electrodes on the penis, do shrink!), or if your lesion is to the side, then the IOMED pads are absolutely needed, and the Physion cups will not work well enough.
Tim
This is Hopeful- what doctor did you see- and how much did you pay for the unit.
Thanks,
Quote from: youngpain21 on July 31, 2006, 06:51:09 PM
I have recently ordered a Physion iono unit, and I am having problems with the wrong circuit light constantly staying on and my treatment not working. It will work every once in a while, but it seems if I move an inch the wrong circuit light comes on. Has anyone else had any problems with the wrong circuit light coming on a lot? Everything is hooked up in the right spot, I have double checked dozens of times. I will probably end up having to call the Dr.'s office, but I was just wondering if anyone else had this problem and if so what helped it.
Any success - with this- I would like to know
Hopeful
Rico,
I use dmso, the 99.95 human grade version as part of the Thacker formula. I have never had any problems with burning or blistering. I also use it mixed with aloe vera and evening primrose oil, from gelcaps, as a way to massage my penis and warm up before my nightly VED treatment.
Cheers.
[/quote]
Phil- ANy success- as I have a scrip for oone- but have not ordered yet- please tell me something positive- as it wil be 1 yr. next month that I got my Peyronies Disease...
Hopeful
link=topic=26.msg4676#msg4676 date=1153540314]
ComeBackid,
I had treatments twice a week for 6 weeks. Used both dexamethasone and verapimil. Interestingly, the negative lead was attached to drive mostly the steriod into the tissue. Tried to keep over same location were the plaque could be felt. Used the iomed pad.
Phil
[/quote]
Hopeful,
I seem to have ome minor improvement; maybe a little less curve and a little fuller when erect. I am going to get approval to undergo some more ionto. You should check with ComeBackid or Tim to see what kind of progress they have been having.
Phil
I am not sure how the iontophoresis has helped me - if at all.
I think I could call the low dose, mixed with Dexamethasone (decadron) a failure. Not much changed, and it sure did not get better. I changed over to a higher dose verapamil (I went from 2.5mg to 20 mg per mL), and I applied 2 mL to a IOMED pad. I dropped out the decadron.
After about 30 treatments with that, I have had mixed results. We had a little accident during our lovemaking, where she went North, and on her way back South, I bent East (and it hurt). I was quite concerned that that area was going to change, and it indeed started to get worse and tilt towards the left (or "East" from my perspective!). So the repetitive application of ionto to that area seems to have stopped it and made it get better. My long standing placque did not change.
I was ready to say that Ionto of verapamil is ONLY good for new or evolving lesions, but then I went on vacation, and could not do the VED or the Ionto for two weeks - and the older area got worse.
So I don't know - for ME it may have made it better (new lesion) and kept the semi-new lesion from getting any worse. The oldest lesion did not change, it seems.
I may try to do a set of decadron only applied to my older areas, and I will have to do that with the black lead on the penis and the red on the thigh.
Tim
Tim.. I forgot- how long have you had Peyronies Disease??- It is important for me to know- as I understand that IONYO wil notwork well with Peyronies Disease patients that have ha dit for over several years- please advise
Hopeful
Phil- thats great- when you say a little less curve- I am at 35% upward at the tip- If I got a 50% correction- I would feel like a new man- as it is right now- I can't penetrate- and I have lost the desire to try as I feel like a freak- in front of my wife....How long have you had your Peyronies Disease- I forgotu
Hopeful
Dear Hopeful:
In answer to your question, I am 51 and I was 22 when I developed Peyronies Disease. The reason I am here, though, is that, it recently seemed to accelerate into "active" mode.
I firmly believe that *I* have several types of lesions. First, I have "old" lesions, that I define by first having happened a while back (duh), but also as not showing any more signs of progression (no pain, no obvious further changes in the shape, appearance or feel of my penis). Then, I have "New" lesions - those that more recently appeared and which got me moving (and brought me to these boards). My "new" lesions are of a variety of ages, though. See my post below, therefore, to please put my thoughts into context regarding the time I have had a lesion. In brief, I think Verapamil helped me *completely fix* a brand new lesion, it slowed down and stopped further worsening of a "newer" (ie 4-6 month old) lesion, and it does not seem to have helped my "old" lesions, of greater than a year or more.
An advantage (if one can call it that) is that since I was paying attention when my dick got hurt during intercourse about three months ago or so, I was able to start ionto of verapamil to that area within 1 day. Onviously, someone who had never heard of Peyronies Disease is not going to be able to act so proactively. But it does suggest that for those of us with longstanding disease, which sometimes activates, ionto may be a pretty good way to stop it in it's tracks.
Finally, one comment of yours really hit me. I do not want to be too graphic here, but what the hell, we're among friends. I also have an about 35 degree upward bend starting about 2/3 of the way down my dick. The bend is not an acute bend, nor is it unstable (hinge defect); it is more of a gentle curve. Since my erectile function is good (it's good enough - sometimes needs help with cialis), and my penile rigidity is thus pretty good. I have no problem with intercourse.
There are actually some benefits and disadvantages to an upward curve. The tip of my penis, in face to face intercourse, tends to massage her G-spot, and leads to better orgasms - I have not yet heard any complaints about this. This can be enhanced by entering your partner with her lying on the bed and you standing at the foot of the bed (um, between her legs) - the 90 degree angulation between your bodies increases the pressure from the head of your penis on the anterior wall of her vagina where the G-spot it located. A downside is that my control over orgasm is decreased because I find it so much more stimulating to have the head of my penis being rubbed right up against her vaginal wall. When you add in to the mix a bit of anxiety over performance, and a desire to keep a very hard erection (to prevent slipping out), the straining (you know, that sphincter-tightening squeeze we can do to make our erections harder)(similar to a "Kegel" squeeze by a woman) can lead to premature orgasm.
So for me, while all the above has led to a fairly large challenge emotionally - with concerns over my appearance and abilities as a lover - I have still found it possible to have sex. Listen Hopeful... go somewhere and take a good hard look at a new baby. A child with a presumably thicker diameter than your penis can travel through the vagina to the outside world. If that new baby can do that to get out through a vagina, then surely you can find a way to get your (presumably thinner diameter) penis into a vagina. And if your penis is larger than a newborn baby, well, go ahead and have the surgery - a Nesbit tuck shouldn't affect you at all! ;D
Seriously - talk to your wife and let her know how you *feel*. If you think that you look like a freak, then ask her how she sees you. Ask if you and she can lie together in the dark and touch each others' faces gently. See if she would be willing to simply run her fingertips over your skin lightly,and then let you do the same. You are not a freak - you are a decent and thoughtful man with a scary problem, who is scared and worried over his future. You have already cast your lot with her in life - do you really thinks she is going to abandon you over this? I doubt it.
Tim
Tim:
Way to go Doc! Great post with meaning for someone who needed help.
Special regards, Old Man
Thanks Tim, I needed that too! You have a wonderful way with words. Keep the Faith...Blink
Hopeful and the rest of you..... LISTEN to what Tim says! I do not find my man's dick freekish is any way shape or form. Currently he does, but I'm working on and I'm postiave I can cure that! Let's just say that curve, while it's new to you, can be very useful!
Got a half tube of expensive PDLABS TV left if anyone wants it. Otherwise, I'll try it on my new headwound from my girlfriend for asking her to apply the emu oil on the plaque. Great post also Tim (As usual) ;)
Ziggy.
Very funny ziggy!
Guys,
I completed the 25 applications of 20mg/mL verapamil. I was using IOMED pads and filling them to 2.5 cc's. I attached the red alligator clip to the penis, and black alligator clip to the thigh. At the conclusion of my treatment I can report there is no noticeable change in plaque, size, or bend, and no increased bloodflow, I can't say that the treatment did not prevent my condition from getting worse, but I believe the efficacy to be 0, I'm extremely disappointed.
Next I will be trying only decadron applications using the black alligator clip or negative lead on the penis and the red clip on the thigh. I will keep everyone posted on my final resuts of this. Decadron has been said to work better on longer standing scars, and mine is definately that at 7 years and aging by the day.
ComeBackid
Dear Tim..
I want to personally thank you for writing this message to me. It really touched me emotionally. I am sure a lot of the problem is with me mentally- however, besides the Peyronies Disease...I have ED...The one doctor that I went to (Dr. Carroll- who I do not think much of) would not prescribe Cialis or Viagra for me- as I have a history of heart [roblems- (electrical- arrythmyia) - so this is not working. I do not have a family doctor or a current heart doctor- I do not take meds - I live with it. I also must say.. that I do consume alcohol usally every night- at least 2-3 glasses of wine or sometimes 2 martinni's, which Iam sure effects the ED.
As for my wife and I.. I think it may be too late- as we no longer have that type of intimacy- and it is terrible.
I have lost girth and size.. you are correct about a Baby- I am going to print your post and give it to my wife to read. Maybe she will begin to understand how I feel.
As for the IONTO... which one are you using?- and who prescribed it for you? - How long- and are you happy with the overall results.. My Peyronies Disease is a year next month- I have a script for one- but have not ordered it- Do you suggest trying it.. even though it cost $1,000??
Please advise,
Hopeful
QuoteDear Hopeful:
In answer to your question, I am 51 and I was 22 when I developed Peyronies Disease. The reason I am here, though, is that, it recently seemed to accelerate into "active" mode.
Post edited to remove the quoting of an entire post that already appears below
ComeBackid-Am truly sorry Ion didn't work. I think we were all waiting on your results to make decisions on our treatment options. I do want to remind everyone that what may or may not work for someone, might have completely different results for others, unless it's TV, which I think we all agree is practically worthless as a Topical application. Keep the Faith ComeBackid. I know you will continue on with the fight as I feel you have become one of our strongest soldiers/brothers here. Hopeful, I really hope you and your wife can possibly seek some counseling. I am living proof that(see psychological components post) there are truly receptive and caring women out there, once they understand the physical and emotional impact this has on men. I have gained alot of knowledge since having this Peyronies Disease on how to have more intimacy and pleasure with a woman in many other ways. If a woman knows that you appreciate her, makes her feel like the most beautiful/sexiest woman alive, finds that deep emotional connection that they desire, and last, finds ways to pleasure her in bed(different positions manageable with Peyronies Disease, orally, toys, foreplay, etc.), then I guarantee that woman would be CRAZY to leave her man. PM me if you need someone to talk to. This post may need to be moved to other subject matter. Sorry guys.Tend to ramble on.Zig
ComeBackid, I feel for you. You sound relaxed though - so a break seems to have done you good. Like you, I have sort of "failed" iontophoretic applications of low and then high dose verapamil. I do wonder if those of us who fail, might have done better if we had the ability to use a higher driving current - say 6 instead of 4 milliamps. Since I am interested in using this application if at all possible, I will look into that and keep you and others posted. I look forwrad to hearing how it goes with the decadron - hope springs eternal, I guess.
Hopeful, I am sorry to hear that it may be too late for the two of you, but you might be wrong. The doctor who told you to avopid viagra or cialis was covering his ass - not willing to take a very low chance to help you. My understanding is that ischemic heart disease (a history of heart attacks) is a risk for doing worse on viagra - maybe. I know of no data that supports the idea that viagra hurts a conduction defect (which does not sound too bad).
I would see if cutting back to no more than one absolute ethanol equivalent a day (one beer = one glass of wine = one shot of distilled alcohol) doesn't help your ED. Also exercising daily improves erectile function greatly, as does weight loss if elevated. But using viagra or cialis should not present ANY risk at all - unless your doc knows something no one else knows. Try a better doctor - maybe a urologist could do it or a family doc, or even a doc in the box.
If you feel more likely to suceed with your erections then you are more likely to feel enough confidence to attempt to heal with your wife. So, as always, it comes down to YOU taking care of YOU. The only way to have a healthy "us" is to first work on yourself.
Good luck, Tim
Tim,
I was wondering what the results were when you measured in your "lab," how much of the verapamil was left over on the delivery pads after an apllication, I believe you said you were going to measure to see just how much was being driven into your penis, is the news good?
I'm also very interested to hear about what you find out on increasing the amps, however I probably can't afford another machine at this point after spending over two thousand dollars on a VED, IONO machine, TV from PDLabs, L arginine, ALC, and vitamin E. This is something I'm surprised PHYSION has not pursued.
I'm starting to wonder myself if PHSYION falsified or over hyped their results in their literature. Dr. Carrol told me dozens of people come to his office in Orlando, Florida to get Iontohporesis treatments and see moderate to good results, later it was learned that he only sees patients via teleconference, still many questions left unanswered about that guy, as hopeful has pointed out. Dr. Levine doesn't even promote Iontophoresis, if it works so well why isnt he? Why is phil seeing results using the negative lead and using decadron only when the study from PHYSION calls for mixed verapamil and decadron using the positive charge. Why are several pharmacists telling me its impossible to mix verapamil and decadron together for Iono delivery cause they are different charges? Why when I called PHYSION did they give me a bs answer and say they don't really know? Still many questions left unaswered about PHYSION, and I seriously have to wonder if they over hyped their product seriously.
When I get home in a few days I"m going to start the decadron sequence with the negative charge(black alligator clip attached to penis), will keep everyone posted if I see any results... or if I don't.
Dear ComeBackid,
I share your disappointment about the iono results. Also, I share your feelings of confusion about why the results we are seeing are so different (and don't forget the essentially negative study out of Spain for the same protocol). In a recent review, a reviewer summarized this by saying more data needs to be collected, and cited one limitation of the study being that it was a "single institution" study. To me, that is code for "bias".
One need not attribute to malice that which can be adequately explained by other means (greed, academic striving for promotion, a strong belief that something is "right" - whatever). I do know that a placebo effect can be stronger when a product is "sold" harder - though I canot find a way for that to happen with something like penile straightening (seems objective). At any rate, I agree with the viewer that more needs to be done.
I agree that decadron needs to go in with a negative lead if used alone. I am uncertain if Physion's explanation is correct - that the decadron and verapamil form a complex that is connected via their opposite polarity (but with a continued negative total charge), such at a a positive charge will carry the decadron in "piggybacked" to the strongly negatively charged verapamil (which is pulled in by the positive lead).
I did not find any data in a fairly lengthy reading of the iontophoresis literature, nor did the head of lab medicine at my hospital know, if that theory was correct. It seems like a fairly easy thing to check - but in answer to your question, I have not yet done so. Instead, I just moved ahead to the stronger verapamil and IOMED pads. I am also willing to just move ahead like you to a reversed polarity iono of the decadron to try it out. Like you, I wonder if it would have been better to spring for the more expensive machine that IOMED sells.
I'd still like to check out some of these questions, but it is a matter of finding time.
Tim
Tim,
I did not know PHYSION sold a more expensive machine, I take it with a stronger current? After reading their study it seemed like there was only one machine, and it worked on like 60 percent of people or whatever there study claimed. How much is the more powerful machine? I tried to get insurance coverage for my PHYSION, no chance in hell that will happen!
ComeBackid
ComeBackid, Physion does not sell a different machine; IOMED does.
http://www.iomed.com/prod-phoresor850.html
and the...
http://www.iomed.com/prod-phoresor900.html
The 850 is more programmable, and allows one to manipulate the settings a little bit. I would remind everyone who orders any such equipment, that tinkering runs the risk of causing full-thickness burns to the skin (I have seen that once, and it is more common in African Alericans than Caucasians)(we do iontophoresis in my clinic all the time, since it is used to diagnose cystic fibrosis).
The 850 allows one to seet the current for a 1 - 4.0 amps range (but not higher). I am not really sure of the output of the Pghysion one now.
Tim
"Subject line on this post edited for easy reference"
here is the astract of the Italian work on combined verapamil and PLC:
***********************
Oral propionyl-l-carnitine and intraplaque verapamil in the therapy of advanced and resistant Peyronie's disease.
Cavallini G, Biagiotti G, Koverech A, Vitali G.
Medicine Reproductive Unit, Societa Italiana Studi di Medicina della Riproduzione (SISMER), Bologna, Italy. giorgiocavallini@libero.it
OBJECTIVE: To ascertain whether oral propionyl-l-carnitine combined with intraplaque verapamil is a useful therapy for advanced or resistant Peyronie's disease. PATIENTS AND METHODS: The combined drugs were assessed in two studies. In the first, 60 patients with advanced Peyronie's disease, diagnosed using accepted definitions, were randomized in two subgroups treated with verapamil intraplaque infiltration (10 mg weekly for 10 weeks) plus a 3-month administration of propionyl-l-carnitine (2 g/day), or verapamil infiltration plus oral tamoxifen (40 mg/day) for 3 months. In the second study, 15 patients with resistant Peyronie's disease (progression despite previous therapy) received verapamil plus propionyl-l-carnitine. The differences between subgroups or between the variables before and after therapy were compared using analysis of variance or the chi-squared test. RESULTS: In the first study, the reduction in pain was the same in both subgroups. Propionyl-l-carnitine plus verapamil significantly reduced penile curvature, plaque size, cavernosal artery end-diastolic velocity, the need for surgery and disease progression, and increased the International Index of Erectile Function score and resistivity index of the cavernosal arteries. Tamoxifen plus verapamil had none of these effects. No drug combination affected the peak systolic velocity. Patients receiving verapamil had no side-effects but those taking tamoxifen did. In the second study propionyl-l-carnitine and verapamil modified the disease patterns as in the first and no patient had side-effects. CONCLUSION: The combination of propionyl-l-carnitine and verapamil can be considered the therapy of choice for advanced and resistant Peyronie's disease.
This is the original paper on Verap ionto:
*****************************
Transdermal Electromotive Multi-Drug Administration for Peyronie's Disease: Preliminary Results
FRANCESCO MONTORSI,*† ANDREA SALONIA,† GIORGIO GUAZZONI,† LUIGI BARBIERI,† RENZO COLOMBO,† MAURIZIO BRAUSI,† VINCENZO SCATTONI,† PATRIZIO RIGATTI,† AND GIULIANO PIZZINI*
From the *Institute of Human Anatomy, School of Medicine, University of Milan, Italy; and the †Department of Urology, Scientific Institute H. San Raffaele, Milan, Italy.
ABSTRACT: The purpose of this study was to clarify the actual therapeutic potential of a new transdermal drug delivery system (electromotive drug administration; EMDA) for selected patients with Peyronie's disease. Forty patients with Peyronie's disease were treated by electromotive administration of the 3-drug association orgotein- dexamethasone-lidocaine in a double-blind, placebo-controlled, partial crossover study (study 1). Another 25 patients were treated by EMDA with a combination of verapamil-dexamethasone in an uncontrolled study (study 2). Treatment sessions lasted 20 minutes each and took place 3 times a week for 3 weeks with a current of 3 mA. Patients were assessed before treatment and at 1- and 3-month follow-up examinations. Assessments were based on sexual history, physical examination, and dynamic color Doppler ultrasonographic results. Adverse effects of EMDA were not reported.
In study 1, the clinical results observed after treatment proved to be significantly better than those of the placebo. Penile pain disappeared in all patients in both studies. Penile lesion (nodule or plaque) either disappeared or significantly improved in 79% and 90% of patients treated by the 3- and 2-drug association, respectively. The improvement of penile deformity also was notable although it did not match the effect observed on penile nodules or plaque (62% and 88%, in studies 1 and 2, respectively). In both studies, more than 80% of patients reported a definite amelioration of penile rigidity, which paralleled the improvement of penile dynamic color Doppler ultrasonographic parameters. Overall, the combination of verapamil/dexamethasone achieved better clinical results than the 3-drug combination.
Electromotive drug administration is a novel technique capable of safely achieving satisfactory results in selected patients with Peyronie's disease not only in terms of improvement of patient's symptoms but also due to the reduced need for penile surgery. Key words: Iontophoresis, electrophoresis, electroporation, therapy. J Androl 2000;21:85–90
I reread tha article carefully. I think that ojne aspect of the care originally given (to these patients) compared to the subsequent studies is in the carefull attention paid to preparing the skin. Either this data was fraudulent (possible), or the subsequent studies (including what ComeBackid and I have done) are being done with a differrent method.
In group 1 (not sure if the did it wwith group 2) they prepared the skin for drug delivery as follows:
The active electrode receptacle, which contains the drug solution (total volume 5 4.8 mL), has an elliptical area (8 cm2) and is attached to the skin at the plaque site (the Figure). The dispersive electrode comprises 2 layers of cellulose and polyester foam with a wire grid sandwiched in between. After degreasing the selected area of skin (a necessary procedure for all electrodes, active or dispersive), a
thin layer of gel for ultrasonography is applied, and the dispersive electrode is soaked with saline solution and then laid on the gel. This arrangement allows even distribution of current through the large surface area (50 cm2) of the electrode, thus reducing the risk of thermal skin damage.
That degree of preparation is more than referred to in later publications (which do not explain the methods this well) nor is it part of what we have done to prepare our skin. Makes you wonder if they set themselves up to fail by trying to make it easier for the home user. I have seen this before - where a study is done well, but implementation in a clinical setting is done badly.
It also makes me wonder if Verapamil injections are done as well in the hands of other docs compared to those who originally did the research.
Or, it could be they are all frauds.
Tim
Tim,
So basically to sum it up in plain mans talk, they are using a more complex and different method to prepare their skin to place the electro pad on then we are? So they over simplified the home unit to much and left out crucial skin prepartion methods that we need to get effective delivery of the verapamil and decadron?
I don't know if I believe that study they state a 79% success rate, Phil saw some results using the negative charge and using only decadron! I wonder if he used any kind of special skin preparation method, or just swabbed his skin with the alcohol pads and shaved where necessary?
ComeBackid
Tim and ComeBackid,
Do you think that maybe the thoughts that the current is what is working more than the drugs thereselves....I know this has been asked before and with this arrangement it allows of a even or more effective distribution of the current....I have seen advertising on some of these electro impulse pads such as Dr. Ho's massage which I have used for injury's and they work, I tried to use it on my unit, but the pads are too big, he does claim in his literature that it breaks up scar tissue....the problem with the penis is there is no muscle in it...tissue and nerves only.....it does seem if you prepared the surface for better current distribution you would transmit also deeper in the scar......
Rico
Rico, There have been controlled studies that did not show effects of current alone - can't recall where I read that.
But then, controls given saline injections as controls showed an about 40% improvement (when compared to Verapamil injections, I think), in one study. They hypothesized there that the needling of the lesion might have essentially been a form of Leriche surgery (loosened up the lesion). So sometimes controls improve for reasons that are not well understood. And in that Spanish study, no one improved following ionto of verapamil and decadron.
So it does again raise the issue of either methodology, or integrity.
Tim
Tim,
After seeing our own poll results form the verapamil injections I have long pondered was it simply the needle that made the condition slightly get better. "slight improvment," was the common good response from people. The majority in our poll seemed to not improve or get worse, while a few slightly improved, and almost no one healed or got really better. This leads me to believe that the needle injections maybe have slightly broken up some of the hardened tissue and plaque for a slight improvment, with the verapamil doing virtually nothing. These needle injections may have acted as a minor lariche like technique.
Look at the Iontophoresis, no results for me and Tim, and now a spanish study citing that no one got better after decadron and verapamil usage. I've always had doubts about the PHYSION company, look at their cheesy website? I bought the machine out of hope and the successful studies that were out there. I think the issue here, and this is just my gut feeling, is an issue of integrity in this case. For every REALLY GOOD doctor like Tim, how do we know there isn't a cheating lieing son of a #@$@# out there? I must remind everyone that another company had a product they claimed worked, Dr. Fitch even published a report citing high efficacy rates, speaking of PDLabs...
ComeBackid
ComeBackid/Tim,
I did have a small amount of improvement: went from 45 degrees to 35 degrees, and a bit fuller. I used dexamethasone and verapamil with the black negative lead. I didn't prepare any way other than cleaning with alcohol. It could be the iontophoresis, or it could be the natural course of my disease. I can't be sure. It wouldn't hurt to try the negative lead for another series of treatments. 20 min at 3mA is easy; I'm going to try to receive an additional series of treatments. Also, going back to get a script for Pentox. I'm 25 months into this thing and still hopeful that maybe my body can reduce the scar.
Phil
Are any docs doing this in USA???
Hopeful
Quote from: Tim468 on August 29, 2006, 09:07:10 AM
here is the astract of the Italian work on combined verapamil and PLC:
***********************
Oral propionyl-l-carnitine and intraplaque verapamil in the therapy of advanced and resistant Peyronie's disease.
Cavallini G, Biagiotti G, Koverech A, Vitali G.
Medicine Reproductive Unit, Societa Italiana Studi di Medicina della Riproduzione (SISMER), Bologna, Italy. giorgiocavallini@libero.it
OBJECTIVE: To ascertain whether oral propionyl-l-carnitine combined with intraplaque verapamil is a useful therapy for advanced or resistant Peyronie's disease. PATIENTS AND METHODS: The combined drugs were assessed in two studies. In the first, 60 patients with advanced Peyronie's disease, diagnosed using accepted definitions, were randomized in two subgroups treated with verapamil intraplaque infiltration (10 mg weekly for 10 weeks) plus a 3-month administration of propionyl-l-carnitine (2 g/day), or verapamil infiltration plus oral tamoxifen (40 mg/day) for 3 months. In the second study, 15 patients with resistant Peyronie's disease (progression despite previous therapy) received verapamil plus propionyl-l-carnitine. The differences between subgroups or between the variables before and after therapy were compared using analysis of variance or the chi-squared test. RESULTS: In the first study, the reduction in pain was the same in both subgroups. Propionyl-l-carnitine plus verapamil significantly reduced penile curvature, plaque size, cavernosal artery end-diastolic velocity, the need for surgery and disease progression, and increased the International Index of Erectile Function score and resistivity index of the cavernosal arteries. Tamoxifen plus verapamil had none of these effects. No drug combination affected the peak systolic velocity. Patients receiving verapamil had no side-effects but those taking tamoxifen did. In the second study propionyl-l-carnitine and verapamil modified the disease patterns as in the first and no patient had side-effects. CONCLUSION: The combination of propionyl-l-carnitine and verapamil can be considered the therapy of choice for advanced and resistant Peyronie's disease.
Tim,
If you were me - knowing what you know- what system would you go with- Physion or BioMed
Hopeful
Quote from: Tim468 on August 20, 2006, 12:02:11 PM
ComeBackid, Physion does not sell a different machine; IOMED does.
http://www.iomed.com/prod-phoresor850.html
and the...
http://www.iomed.com/prod-phoresor900.html
The 850 is more programmable, and allows one to manipulate the settings a little bit. I would remind everyone who orders any such equipment, that tinkering runs the risk of causing full-thickness burns to the skin (I have seen that once, and it is more common in African Alericans than Caucasians)(we do iontophoresis in my clinic all the time, since it is used to diagnose cystic fibrosis).
The 850 allows one to seet the current for a 1 - 4.0 amps range (but not higher). I am not really sure of the output of the Pghysion one now.
Tim
"Subject line on this post edited for easy reference"
If I were you Hopeful, I would go to a doctor. Have you yet? I don't recall.
In answer to your question, I do not know who is doing it in the US. We have a very small number of "failures" (I qualify that as I think verapamil slowed down a new lesion) TWO of us did not get a good respones. Hardly a scientific study.
If I had to do it over again, I would do the more expensive unit that is programmable. I would also win the lottery to be able to afford it.
Tim
Dr. Carrol's assistant called me today (Israel) and wanted to know how the Iontophoresis came out. I told him I saw absolutely no results, he told me maybe I should purchase another 25 treatments. He said they have reported a 76% success rate using the Iontophoresis with men in their office and around the contry, he said most people do see some improvement of like 30 degrees. He told me that one should not use the negative lead or decadron only, but follow the verapamil and decadron mixing procedure prescribed by PHYSION. Phil has reported results using the negative lead with decadron only, pharmacists are telling me that one can't use verapamil and decadron together, when I call PHYSION they have no answers, wow I'd say the science behind Iontophoresis is hardly perfected or understood, some are saying the current alone heals your peyronies. I think Tim is as frusterated as I am with all this lack of clarity.
ComeBackid
I am going into a fourth round of treatments. Call me stubborn :)
So far, there are mixed results. The developing lesion at the end of the penis is stable or improved. At full ereection it is straight, though there is a tendency to bend while getting hard. The lesion at the base is still present, but much harder to get drug delivery to. Getting the application pad to stay in close contact with the skin is harder at that point, even using the IOMED pads. I am now trying a IOMED pad that has a gel-interface, since that is more like the original methods presented in the Physion studies.
Tim
Tim,
I've forgoten what your protocol is. Are you using only decadron or verapamil? Positive or negative lead? Are the gel pads any cheaper than the TransQE Pads? I may look into them if they are similar to the pads used in the PHYSION study.
ComeBackid
>>Are you using only decadron or verapamil?<<
Verapamil. I mixed a decadron (4 mg) with a higher concentration verapamil and it precipitated out (which does not happen with the lower dose of verapamil)
>>Positive or negative lead?<<
Red to penis and black to grounding pad
>>Are the gel pads any cheaper than the TransQE Pads?<<
All the same price. In retrospect, I would not buy the "TransQ-E" because the pad is not as flexible as the "Optima-A" pads (which have a fiber feel to the interface).
>>I may look into them if they are similar to the pads used in the PHYSION study<<
In the Italian study, they used a gel interface for the medication that helped with absorbtion (or so they said). I hoped that the IOMED pads with a gel like interface might be better - and right now it is too soon to tell.
Tim,
I was going to PM you but I thought I'd post on the forum so everyone can read and add critical thought. I was thinking about why is Iontophoresis failing for us? Now it did nothing for me, and you said it may have or did stop a new lesion, how can you really measure that? Perhaps it simply did nothing at all? My first thought is, we are using the IOMED delivery pads and maybe this hinders the delivery process? Besides this we were both using the stronger concentration of verapamil, I used it by itself, now I'm doing a decadron sequence using the negative lead. Phil has reported results using this protocol, and it was recomended at the mayo clinic by his doctor, his philosophy was that decadron (steroid) would work better on longer standing scars. I think once I do a decadron sequence I will then try another run with mixing the verapamil and decadron, at the lower level of verapamil just like the protocol calls for, and use the IOMED gel pads, I must say the pads are getting expensive as hell though! To me it seems like someone is blowing smoke with this 76% rate, regaining lost size and reducing curve...
The original verapamil reports (on any method of application) all suggest that it will work better on new lesions. You and I do not have "new" lesions. So getting better may be out of the cards for us with this technique. OTOH, we both have had some element of worsening (or concern about that) and to that extent, some of what I deal with IS new. So I use it to see if it holds things at bay.
I do believe that two weeks of vacation without the VED or ionto led to some worsening, so I am doing both again religiously. I am VERY unconvinced that the SOMA protocol makes any sense for me, since I mostly have "dents", and those seem to be best treated by a lateral "tugging" (or expansion) that happens best in the bigger cylinder.
Tim
My two cents, for what it's worth:
It's been more than a year after my sixth and last verapamil shot.. I also never went back for my post-op "workup" (a repeat of the initial sonogram) in Dr. Mulhall's office. (On one occasion my blood pressure was too high for them to do the test.)
My plaque seems to have diminished significantly, if not disappeared altogether. Now, I haven't noticed any major aesthetic improvement yet. The bend and dent are both still there, although they seem a bit less obvious and I don't seem to have the penetration difficulty I had earlier in the Peyronies Disease progression.
Maybe I'm just getting lucky for a change.
Bob
Bob,
Did you take the VI survey on our webpage?
I've been considering getting Verapamil Injections but am left undecided on what to do. I've tried TV, and Iontophoresis, and ALC, L Arginine, seems to help with bloodflow but no resolution in the bend. I'm still working with the VED as well. Currently I'm taking pentox and this seems to have a really good bloodflow effect and allow a more full flaccid penis. Seems like the verapamil injections have worked for some, but our own survey does not show very good results, however it isn't exactly scientific. It seems like I need something intrusive to get in there and break up my hardened plaque, on the other hand would it create more plaque? Tough choice considering I don't want to worsen my condition ???
ComeBackid,
For what it's worth (and having gone through it), here's my 2 cents worth...
Prior to my injections, I had a 70 degree upturn just behind the Glans. When semi-erect, I could feel a firm cord like structure running along the top of the penis up under the Glans. After all the shots (12 in all), the cord and bend was still there, and I now have nodules around the injection sites :o. I'd specifically asked my Uro if the shots could cause more scarring, and he assured me that there was a study that showed that they do not. My experience seems to be contrairy to that study :-[.
If you do decide to go for the injections, be careful with the VED. After quite a few of the shots, I was very bruised for up to a week. Toward the end, when I'd begun VED and was still getting shots, I had to stop use of the VED until all the bruises had gone. This is why I had to re-start the protocol a couple of times...I'd get started for a week, and then I'd have to stop for a week, so I'd re-start.
I wish I could give you more positive reports, but as Sgt Friday said...Just the facts maam.
Steve
Note to all:
This is back up what Steve says in his post below. I strongly urge any and all who are getting verapamil injections not to use the VED until you have finished the cycle of ALL SHOTS. My reasoning for this is that the site of the injection can and will be exposed to high vacuum pressure during the use of the VED and will cause further trauma. The actual penetration of the needle itself presents enough trauma to the penile erectile tissue and there is no need to aggravate that area.
My VI therapy did nothing for my Peyronies Disease, but using the VED during those injections did cause bruising and trauma around the site of penetration of the needles. (BTW, since I have a high threshold of pain, I refused deadening shots prior to the actual injection of the verapamil.) My uro then took me off the VED therapy until all of my VI shots were completed. I waited several weeks before resuming the VED cycles.
The above is only my observation during my VI therapy and does not necessarily relate to any other individual, but submitted FYI.
Regards to all, Old Man
Note to ComeBackid...
Yes I did take the VI survey, but it was quite awhile ago. The diminishment in my plaque is quite recent. I'm under the impression that I cannot take the survey again. Correct?
Bob
Bob I wouldn't just to keep our stats accurate, where you doing another treatment since the VI's ? Do you really believe the plaque went away cause of the VI's? Did you get an ultra sound to measure the decrease in plaque? I'm glad your plaque is diminished just don't know what caused it, we gotta keep the data accurate. How many injections did you get? I'd say about a month after your done with all the injections is enough time to then evaluate how they worked. If its a year later and your plaque suddenly heals or your taking something else and it gets better, I probably wouldn't attribute that to the VI's, however its not impossible.
Has anyone seen this study previously? I don't remember seeing it for some reason and it raised some skepticism.
http://www.healthcentral.com/drdean/408/24638.html
Dear members and guest:
In my short time as a peyronies victim(five months), I have went through several phases of this condition...mostly from a mental stand point... the physical condition has pretty much been stable, but when you lost two inches right off the bat, well that is enough anyway:)...
My first reaction was of course the Old...OH Fu%^&K what has happen to me!!! And then the I will figure this out and go after the scar tissue ect... I have always been proactive from a stand point of research and tying some supplements, dmso(thacker), and good diet and exercise...the first several months I mostly read and try some supplements and freaked out.... Went to a Urologist ect....
Today I'm doing ginseng, gingko and I actually did a thacker wrap today with VED exercises and ran four miles this morning and did some leg work....and other supplements and might have a Epsom salt bath....
Today I came to realize that the ED drugs are the drugs of choice for peyronies it seems....I was reading on ED drugs today and Pentox, trazdone and viagra where the three choices....I never seen Pentox before reading on it as a ED choice, it was listed as a 50% chance of helping with viagra at 75% and trazdone at 25%.... they said they all could be use together also...now this was not about peyronies at all, just ED...but like Levine says, the reason they say don't use if you have peyronies is just because they never tested it with peyronies and Levine says he has no people in his mix who have had problems....
I join the APDA today, took the survey and posted a question...being a member I suppose to receive information before the street, I feel I would get it on here first, but it was free to join...
I'm not sure if I'm going to start the pentox/viagra/arginine right away, I'm getting some good results with the ginseng and ginkgo right now and my running, NTE are very strong....the hinge effect isn't as bad when erections are strong and maybe just having some Viagra around encase I feel like going on a date or something....there suppose to be one of the best urologist on peyronies two hours away also, and he is Asian:)... I love anything Asian:).... I don't know if it would be worth the drive or not.... my guy suppose to be good also and he will write the script for what I need, so I'm going to keep on the ginseng and ginkgo till I see him and keep reading..... Oh, has anyone else out there try trazdone with Viagra and pentox at the same time, I think ComeBackid has...
Oh, I don't know where I was going with this post:), other than I was a little surprise to see pentox(trental) as a ED drug at first, but now I'm not....the more I read on ED drugs it is the way to go if the hinge is the problem, now with bad curve, well this is another issue, VED and injections....On the APDA site this May they put out another report on injections and say 60% success, which isn't too bad really....If my curve was bad from the reading I have done, injections would be the way I go if curve was over 50 degrees along with VED.... 30 to 50 degree I would go Iono verapamil or pentox/viagra/arginine or both...and under 30 or if you could have sex then I would do VED and supplements or the pentox/viagra/arginine and keep some Viagra or your choice Cialis ect around for some good wood.... and if I was stressed out and wanted to kill two birds with one stone I would take trazdone.... I'm starting to feel more confident with the ED options out there and how they could come to the peyronies victims rescue to a certain degree... I really believe that the ED market will have a positive effect on are condition.... look today...VED, Pentox, Viagra, arginine... all ED driven products and the best thing out there today for us....
Rico
If the injections you are talking about with 60% success rate are verapamil, they have to prove it to me with objective measurements, random selection, a control group, and unbiased oversite of the study.
My initial tendency after my exposure to information and personalities in the Peyronies Disease community, is to say, "horse feathers" ! ::)
Please excuse my profane outburst.
Hawk,
I can't say that I have any success with injections since I haven't had any..my urologist said that I can take the topical and it would be less of a hassle vs getting the shots, and wasn't that positive on the topical so I'm just going by what I have read...
Now if I think how many years they have been doing the shots...Hmmmm. why continue...Mayo Clinic is no joke, but if you go to there site they list the three top choice other that a operation are vitamin E, potaba and corticosteroids shots?
My thought is if I was at a curve that I couldn't have sex then before surgery I would try the shots, what would I have to lose at this point....slight curve then I would stick with VED and supplements or oral drugs..... maybe try the oral drugs and ved first and then shots, just don't go for the knife until you have exhausted all other choices.....look at me, I'm the last one to go conventional or the drug route....but I'm looking at tradzone and pentox and viagra also.... maybe because the more you do research you become familiar with them and they don't look as intrusive... if Levine was going to be the one to stick me with the needle and he felt it was the best chance, then I might consider.... it would have to be someone with some experience and one of the options I felt I only had left...
Hawk I don't blame you for being non needle happy, since this is what bought on your peyonies....my gut tells me that the needling of the plaque along with ved could be of help, more than maybe the drug itself....I use dmso before to try to soften the plaque, what ever it is, warm bath, massage, heat, shots.....or circulation...I think there might be something to it...
Rico
Hawk:
I join you in saying HORSE FEATHERS to the verapamil injections. Had only 6 of them before my Peyroines turned really sour. There was less plaque and/or nodules before starting the injections. They were placed directly in the plaque area and at times outside of that area.
Bottom line, none of them did any good, only worsened my condition. I very abruptly told my uro, not no, but emphatically no to any more of them.
The rest is history now as other methods have done the trick for me.
Regards, Old Man
Hey ComeBackid
This is hopeful- anything wituh the IONO??-
Hopeful
208453660
Tim- I have had Peyronies Disease for one year- what is considered a new lesion-? Everything I read was that it would take a year to stabilize?- WHat is your opinion?- And is your protocl working for you?
Hopeful
Quote from: Tim468 on September 21, 2006, 07:35:25 AM
The original verapamil reports (on any method of application) all suggest that it will work better on new lesions.
Rico- from your quote below- I am at 35 degree upward-have stayed away from ED- because of heart arrythmia?- I am at the point now- where I am willing to take the chance for some hard wood again- what is your call
Hopeful
Quote
If my curve was bad from the reading I have done, injections would be the way I go if curve was over 50 degrees along with VED.... 30 to 50 degree I would go Iono verapamil or pentox/viagra/arginine or both...and under 30 or if you could have sex then I would do VED and supplements or the pentox/viagra/arginine and keep some Viagra or your choice Cialis ect around for some good wood.... and if I was stressed out and wanted to kill two birds with one stone I would take trazdone.... I'm starting to feel more confident with the ED options out there and how they could come to the peyronies victims rescue to a certain degree... I really believe that the ED market will have a positive effect on are condition.... look today...VED, Pentox, Viagra, arginine... all ED driven products and the best thing out there today for us....
Rico
Hopeful.
Are you asking a forum member to make the call on whether they think you should risk ED drugs with your heart arythmia???
I think that is better directed to your doctor!
Ionto has not worked for me, in retrospect. Of course, I do not know where i would be without it, but it has not done much to make me better.
Hopeful, see a doctor about your stuff.
Tim
Hopeful,
You need to check with your doctor on arrhythmia like Hawk said...
The combination with the VED, be it injections, IONO, dmso(thacker), supplements ect...has to be ones own choice base off of his research and needs... it seems also that some respond better to one method than another... but once again if there are other health issues involved I would get several opinions on drugs or supplements(herbs), that might put you in serious danger...
Rico
I wrote you a good reply that I wanted you to read, when I went to send it i learned your inbox is full, you have to delete some messages my friend, my message was probably not the only one that you did not get from someone! I don't want to post it on the forum as its kind of personal but something I thought you should read and may boost your morale. Get that inbox cleaned out and send me a PM when you do!
ComeBackid
Quote from: hopeful on October 18, 2006, 07:29:27 AM
Hey ComeBackid
This is hopeful- anything wituh the IONO??-
Hopeful
208453660
Hopeful,
Iono did not work for me either, but then again the protocol some people follow is low and slow...
I turned that machine up as high as it would go, it administered the medicine in 4 mins @ 4.0 amps...:)
Mr BLBC
4 Amps :o! I used to have a Hot Dog cooker that electrocuted hotdogs to cook them (2 prongs with each side directly connected to the 120v supply). I have this picture of this happening at 4 amps. Are you sure it wasn't 4 ma?
;D Steve
Thanks Buddy- wil clean today!- Let me know if it comes through- you can always give me a call!
Quote from: pudder135 on October 21, 2006, 02:43:48 AM
I wrote you a good reply that I wanted you to read, when I went to send it i learned your inbox is full,
Rico- The doctors don't know jack shi_- about Herbs,m etc..- I am screwed- have to build up my testostosone
Hopeful
Quote
I would get several opinions on drugs or supplements(herbs), that might put you in serious danger...
Rico
Dear Hopeful,
I am not sure what doctors do or do not know about herbs. In general, it is not what they are trained to do, so they don't do it well.
However, docs do some things fairly well (some of them, some of the time). In order for that to happen, one has to GO to a doc, though. I don't want to beat a dead horse, but have you yet gone to a urologist for help??
If you are talking about iontophoresis, you should start with a diagnosis, and a prescription.
Tim
Hopeful,
Exactly what are your testosterone numbers?
Quote from: hopeful on October 21, 2006, 12:17:57 PM
I am screwed- have to build up my testostosone
Hopeful
LOL Steve, I remember those. Its a little scary in this discussion, though. :)
As James bond would say, " Shocking."
I have an appointment set w/ a new Uro that I understand likes to use the topical verapamil treatment. Without going thru the almost 400 posts on this topic, what is the general consensus from the veteran members here on the ability of this drug to produce favorable results. Is this treatment generally covered by insurance?
We have an active survey on our webiste (just click on the "PDS WEBSITE" button on the forum button bar) to see our Website.
To date, 19 individuals have taken the survey on topical Verapamil. Out of 19:
16 reported no improvement in curve or reported their deformity worsened while using TV
2 reported slight improvement
1 reported great improved
We have only ever had one person post on our forum that they improved while on TV.
Hawk,
It may be beneficial to post a link to our topical verapamil survey in the NEWS section on the main PDS board when you first log in, it seems that many of our members are missing the links to our webpage or not finding it, I often wonder about how many people even know we actually have a webpage, this is quite concerning. I also wonder if there is anyway we can have our polls constantly open to new people to take, while showing the current results to anyone who wants to view them, because since our intralesional verpapamil injection survey is closed how can new members take the survey, the more people that take our polls the more credible they become.
ComeBackid
I actually found your website from the internet before knowing about the forum. I did look around on it and somehow saw the survey results on the verapamil injections, but not the ongoing survey on the topical application. There is a lot of info on your site, and I am still sifting thru all of it. Not enough hours in the day to read and catagorize all the different (and differing) info about this disease, both here and elsewhere.
crs
ComeBackid,
I know of your interest and work in this area and appreciate your ongonig concern and ideas. The problem is that to feature everything is to feature nothing. I have spent considerable time looking at this issue from different angles. I have already placed a red scrolling banner across the very top of the home page. The link to our survey section is the most prominant link on our website. If men that used TV don't have enough interest to navigate there by now, more posts and bigger links are not the problem.
I will re-open surveys from time to time, but leaving surveys open only contributes to inaccuracy since people start taking surveys multiple times making them less credible. I can track that more easily over a short duration.
Hawk- I am in the low 200's
Quote from: Hawk on October 21, 2006, 09:31:59 PM
Hopeful,
Exactly what are your testosterone numbers?
Tim-
I have been to (2) Medical doctors- (1) Uro who is a DO URO- whom I respect- however, he had no real solution for me other than taking warm baths 20 minutes a day and takingoral enzymes- not a believer in drugs or a pump- baths are difficult as they make me weak and cause my heart arrhythmia to act up-also went to a so-called ED Peyronies Disease Specialist Dr. Carroll in Orlando- who never examined me- let his assistant do it- as well as take the tests- in my book - he is in it of r the money- one of these docs that prey on ED and Peyronies Disease patients- I was referred to him by PHYSION - which is another company that I have doubts about?- There are 2 URO's that has been reccommended in South Florida where I live- one at U of Miami and another at Cleveland Clinic- I am trying to get more info before I blow more money!!!! - ABout ready to give up!
If you are talking about iontophoresis, you should start with a diagnosis, and a prescription.
Tim
[/quote]
Yeah, Hopeful, it really sounds like you would do well to go to a real urologist who is up to date and is willing to do all before operating (or can explain if surgery is best, why it is best). best of luck with that.
Tim
After seeing my new Uro today, I am going to start on a TV regimen. In reviewing the survey results on this treatment, I noticed that the beneficial results were very low. Since my Peyronies Disease is only 6 weeks old, and i currently don't have any bending or major irregularities, I wonder if the TV applications will have any better effect than if I had started this treatment after having the disease for say 6 months or longer. Anyone have any ideas on this pro or con? crs
csup,
Waste of money and time, doesn't work, period, I know you said you had problems with pde5 inhibitors before, did you try cialis or levtira?.... pentox/cialias/arginine or ved, TV does not work....doctors will say that, the peyronies doctor don't prescribe it.... they will do injections, but tv doesn't get into the plaque...
Rico
Rico,
You know, I get so confused trying to read thru all these hundreds of posts about this treatment, and that treatment, ...maybe that is why when I was in his office under his Dr. spell I succombed to the pressure. It is only going to cost me 60 bucks, and lately between the Peyronies Disease and my BPH, I have spent A LOT more on supplements. If it doesn't show any improvement in 90 days, then I can add my 2 cents to the negatives on this and feel comfortable doing it. Who knows, maybe I can will it to do some good using mind over matter. LOL. I also asked my Uro about p/a/v, and he said he had read the research and did not think it helped. I go back in 6 weeks, we will see what happens. crs
CSUP,,,,I know that no one wants to hear this, but i did have positive results with the Topical Verapamil, i also used a natural vita-E 800iu a day....I know that no one wants to believe me,,but it worked for me...
I was twisted and bent like a donut to the left and in a lot of pain 24/7 for about 5 months before my doctoor prescribed the TV...I didn't see any results until about 10 weeks into the treatment, and at the end of 5 months i had regained back to about 85% straight, and now i am just slightly bent up...My plaque was the size of a quarter and thickness and very hard to...
I kept on using the vita-E for a couple of years or more < to long > ....I can't say it will work for you, but like i was told by my URO it's worth a try and i'm glad i did....
This is just my opinion and my experience, what you choose to do is up to you...I hope the best for you,,,,It's worth trying anything to get your unit back in shape, I don't downplay anything as what works for one person may not work for another....I think the VED is a good way to go also and some of the other things being suggested....
kimo
Rico, Kimo,
Thanks for your supporting posts. They mean a great deal to me. Rico, I don't think you were trying to undermine my process, you have been involved w/ this much longer, and have seen more negative results. Kimo is one of the fortunate ones. Perhaps the TV will help me also. If it does not, I will have a very serious talk w/ my Uro about pentox, and if he still does not want to prescribe it, maybe I will find another Uro. The beat goes on. My prayers are with all of you. crs
Hi Csup,
For what it's worth, when I first went to my Uro, he also started off with TV. His statement to me was something to the effect that he didn't think that the TV would do much, but he wanted to start off conservatively and work up to the more aggressive treatments. I think that this is a common mode of treatment for most of the medical community (feel free to chime in here Dr Tim), and it makes sense to me. If he'd suggested surgery at my first visit, I'm sure that I'd have been scared off!
Can somebody tell me where to get Topical Verapamil cream. do you need a prescription?
The book discussion was moved to "Urologist and Other Doctors". This is only because the discussion was not related to the topic.
Thanks,
Liam
Not9,,,,,,,Yes you need a prescription as far as i know, i needed one...Also, my insurance payed for mine, but my uro had to write a letter to the ins company 2 times stating that peyronies is a cause of ED,,,ie; one of the causes.....And back then i got my TV cream from PDlabs.......kimo
Quote from: not9inches on November 14, 2006, 04:08:14 PM
Can somebody tell me where to get Topical Verapamil cream. do you need a prescription?
>>I also asked my Uro about p/a/v, and he said he had read the research and did not think it helped. <<
If a doctor says he has read the reports on pentox and does not feel they work, then he didn't really read them IMHO (or he's dumb).
OTOH, if he said that he had read them and they are promising, but he is unsure if they will work as well in people as they have in rats, then he probably did read them and is being conservative. That's OK.
If he says let's go ahead and try it, he probably has the disease as well!
Tim
Tim is right, your doctor is clueless, just reading themself you can tell there is some promise. The lab tests looked very promising, the human trials are under way, with one man supposedly "cured." I encountered the same attitude from Dr. Mulhall in my last visit, he only acknowedged the lab testing part, not that one man had been cured, or significantly improved, obviously he did not read the same report I did, or he simply rejected it. To me this was extremely frusterating, had I been on the ball enough to have a copy of that report I would of handed it to him and let him read it aloud. Actually I was on the ball, I thought Dr. Mulhall would be so progressive with treating this disease he would of already known about Dr. Lue and everything there is to know about the pentox... I was wrong.
ComeBackid
Thank you- I will consider this...
Quote from: Kimo on November 14, 2006, 12:38:39 PM
Hopeful,,yes i had a very positive result with the Topical Verapamil cream..I know that most people don't believe me but it did work for me...
DIFFERENT QUESTONS: Same intro as in another topic category. (So if you read this intro elsewhere, please skip to the new questions!)
I am brand new to this forum. First, my thanks to the sponsors and my fellow "victims" for sharing information, and thank you to all who read this long first posting and respond. I promise to be brief in the future with my questions and thorough with anything of value I have to share.
I am willing to DO ANYTHING that anyone has had even moderate success with and that had minimal risk for further harm. Thus I am posting this prologue in two subject areas since I am asking two separate questions at the end.
My situation is not much different from most I have read about here and countless other places on the web. Even though I realize I will never have back my former penis, I am willing to try ANYTHING that ANYONE has had ANY degree of success with. I have been to seven urologists from coast to coast to coast, six of whom promote themselves as Peyronies Disease specialists, even at major University research hospitals. And I have had no two recommend the same thing (except that MAYBE Colchicine and vitamin E MIGHT help, but there is no proof), other than the prognosis is not good and a return to original size and function will not happen. Only one MD (the urologist with the fewest published credentials) urged swift and aggressive treatment (Verapamil AND Intron A injections PLUS Colchicine PLUS vacuum pumping) during the early stages when I just had a painful bend. All the "experts" urged me to wait six months, then another six months. The waiting has been disastrous. After one full year of steady high doses of Vitamin E and up to six tabs of Colchicine daily, my once proud 9.5x6 inch, naturally rock hard, stick straight member has been reduced to a Viagra-only reduced 3 - 4 inch hook (i.e., slightly curve became a 45 degree dented hook) with the thick original shaft at the base, immediately tapering to finger size, and which is now only useful for "solitary" masturbation. I am single, and
humiliated to begin dating again. I am now resolute to take aggressive actions and seek forum members advice.
Questions re: IntronA and Verapamil.
1) Has anyone had both and can report on comparison?
2) I am very concerned about the risk of possible further injury by repeated injections into a sensitive area. Has anyone experienced further problems?
3) Is anyone unequivocally convinced injections after a year since injury has had any positive effect? (i.e., the improvement is not incidental or otherwise natural)
4) Has anyone had any success in getting medical insurance to cover either injection therapy? (United Healthcare refuses to pay for either the IntonA prescription or the costly injection procedures as it is not an FDA approved use of Intron. I know some plans have paid for the Verapamil injections.)
5) Since the course if therapy is at least 12 weeks, sometimes longer, I cannot find a published Peyronies Disease specialist local (South Florida) who will do the Verapamil injections (there is a noted urologist who will do IntronA only, which as I noted is not covered by my insurance, but will not do Verapamil as he insists it has proven to not be effective). I am concerned about just "any urologist" poking my penis with a needle who is not experienced and well trained in this procedure. is this an unnecessary fear/ Any suggestions? (I cannot afford to travel biweekly for six months across the country for treatmen
Jake, Welcome to the PDS. Your posts are an appreciated contibution to what makes the forum work.
I would be concerned with any old urologist giving me Varapamil Injections VI. I do not consider that an unnecessary fear.
We have a completed survey on our web site on VI that may interest you. http://www.peyroniessociety.org/survey_ilv2.htm
I will allow others to answer your other questions.
Jake,
Welcome to our forum. You should take hawks advice and check out our own VI survey. Also read my topical verapamil report, it is its own thread towards the bottom of the discussion forum. Even the biggest promtoer of verapamil injections (Dr. Mulhall) states that they should only be done in the very beginning of the disease to prevent progression of the disease. Personally, I would never have verapamil injections done, I have not heard from one person who told me they helped their case. I can tell you 5 people have reported to me success in using the VED, I seem to be seeing results from it as well. I would read up on the ved thread and do some research using the search function. If you have any questions or need any help feel free to PM me anytime.
ComeBackid
Hi Jake and welcome to the forum.
I am in the middle of a brutal morning of work, so cannot answer your queries. But I will try my best to think about it and to help give opinions (those are plentiful around here!) asap.
First off, I want to say how sorry I am that you are going through this. As much as I hate what has happened to my own dick, I feel so much for you and what you are going through. An enormous value of this forum for me has been finding a place to vent my frustrations and anger now and then, and to, by listening to others rant, find solace in the act of helping. It has helped me enormously in my 3D life in this regard and in being less ashamed or embarassed by this. Hang in there and we should see what we can do to help each other.
Tim
Hi Jake... This is Hopeful, I read your post- and I feel as frustrated as you. My condition- have had Peyronies Disease for 13 months now- 35% curve at tip- been to several docs-nothing as far as corrective. I have done a lot of research with enzymes- and was trying to find a topical enzyme rather than oral that would work- I found a company that is making one that has had good success with Duprens Disease again- however, I gave up as I expected immdiate results. I also did research for INOTOPHORESIS treatment from Physion- and yet to have found anyone on the forum that has had success.. I cannot get a list of Docs from Physion- which makes fgeel uneasy about buying the device! I believe in the modality, and I felt that a liquid enzyme would be great- cannot get an anwser.
I feel enzymes may be the key as soon discovered from the Forum, that Auxillium has a patented drug ( an enzyme) that has been succesful with Duprens? DIsease (Hand) and will begin testing on Peyronies Disease. However, the bad side of it- is how it is administered.. needle injection- My opinion- STUPID - as injections can cause additional scarring.. No need for this..
There is a company that I sourced INJEX www.injex.com, that just completed a 3,000 patient study, for delivering drugs to the penis via a needless injector ( Viagra, Cialis, etc) - for those patients who cannot take oral medication. The success rate was incredible- I am waiting for the report. I trurned the company on to Peyronies Disease, and suggested that they contact some of the leading docs- and Auxillium to see if they would use the INJEX injector rather than a needle. I said I believe in Enzymes- and uf AUXILLIUM has one- this sould be a perfect match!.
Also, I would like to know hold you are?- And the doc that wanted to do the INOTA injections, was that Dr. Hakim from Cleveland Clinic in Weston?- I live in South Florida as well.
Thanks,
Hopeful
Quote from: JAKE52 on November 20, 2006, 06:50:40 PM
Only one MD (the urologist with the fewest published credentials) urged swift and aggressive treatment (Verapamil AND Intron A injections PLUS Colchicine PLUS vacuum pumping) during the early stages when I just had a painful bend. All the "experts" urged me to wait six months, then another six months.
Hi JAke.. Hopeful again, and to anyone else reading this thread.. I got this quote- from another web site- wriiten by Dr. Levine- basically confirms what I have been preaching!-
HOPEFUL
QuoteLastly collagenases which are enzymes that the body makes to break down scar have also been used experimentally going back into the early 1980's as an intralesional injection therapy for Peyronie's disease. The rationale for use of this agent makes sense, which is to inject a drug that will enzymatically break down the plaque.[/b] Initial trials did demonstrate some improvement but studies were limited in terms of the number of patients, the number of injections and the means of reporting on improvement of deformity. The company manufacturing collagenase has had difficulty in getting support for their research studies to get FDA approval. Recently another firm has purchased the rights to this, and is pursuing a carefully designed multicenter placebo controlled trial. The hope is that with industry support, there will be a properly designed and well controlled trial which may not only show benefit with this drug, but the protocol could be used as a model for future new treatment options for Peyronie's disease.
:-\ Not sure why this made the news, as I've seen these results at least a year ago...
QuoteOrlando, FL (PRWEB) November 28, 2006 -- Dr. George Carroll, specializing in the diagnosis and treatment of male sexual dysfunction for over fifteen years, is pleased to announce that preliminary studies using eletromotive drug administration (EMDA) have demonstrated encouraging results in the treatment of Peyronie's Disease. Dr. Carroll has found that the use of EMDA is especially effective in the treatment of the early stages of this pathology.
Basically, this is the Iontophoresis (although they're calling it EMDA) application of Verapamil and Dexamethasone.
Two of the very interesting quotes from the release:
QuotePreliminary results being developed and documented by Dr. Carroll (www. treatpeyronies.com) using a panel of 24 patients treated in Dr. Carroll's office shows that:
o 42% of patients lost at least 50% of their curvature
o 53% lost at least 40% or more of their curvature
o 95% saw a decrease in curve ranging from a low of 13% decrease to a high of 100% decrease
and
QuoteAccording to Dr. Carroll "EMDA is the best initial option available today for the treatment of Peyronie Disease. Last year we began using a new EMDA / Verapamil/ SomaCorrrect protocol after published studies indicated that 76% of patients showed significant improvement with documented results. These are encouraging preliminary results, but we need larger numbers of patients and physicians willing to participate in further investigation."
:)I think that this is the first mention of Ionto with VED that I've come across in the literature.
Just thought I'd get some conversation started...
I visited Dr. Carroll's site (https://www.treatpeyronies.com (https://www.treatpeyronies.com)) from the paper I included in my last post, and he's 'offering' the following:
Quote*Mini-Physionizer 2.0
*SOMAcorrect device
* & All necessarry supplies for 25 Treatments
Price $1,785.00
He's also selling the EMDA device and the SomaCorrect indvidually (although the prices aren't any cheaper than you can find elsewhere).
One other interesting thing on his site is that
QuoteDr. Carroll has kindly agreed that visitors to this website will not be charged the usual phone consultation fee of $78.
Use this unique opportunity to speak personally to Dr. Carroll for free.
If anyone wants to talk to the Dr for free (although I'm sure you'll probably get a sales pitch), here's your chance.
Pheh!
I spend about 10 minutes up to 2 hours on the phone with patients every day, and that is not ever billed for, nor is it reimbursable through any major third party payer.
His "usual $78 fee"? Run the other way from this guy.
Tim
Greetings
What is potaba and topical verapamil?? Have they had any positive effects at all?? Just curious...tryna gain as much nowledge as possible. Again if anyone here is from London could they please contact me!1
Regards
Steve,
I went to see Carroll- lastyear- I cannot speak highly of him or for that matter Physion... He extracted almost $1700 from me- just for his visit and test- No Soma- No Physion- No Verapaamil- In my opinion He is a prescription factory for Cialis, Viagra, etc... He doesn't even exam you- he has his assistant - which is the tech - stick your dick- and take measurements-Israel
As for physion.. I would strongly suggest that you contact them directly..and ask them for a LIST of docs that are using their system... according to what they have told me- it is only Dr. Carroll????- Carroll comes from a background similar to the Boston Clinic for Men- at one time he owned 18 centers... Do your homework! www.physion.com
Hopeful
Lets get a copy of the study??
Hopeful
Quote from: Steve on November 29, 2006, 09:02:19 AM
:-\ Not sure why this made the news, as I've seen these results at least a year ago...
QuoteOrlando, FL (PRWEB) November 28, 2006 -- Dr. George Carroll, specializing in the diagnosis and treatment of male sexual dysfunction for over fifteen years, is pleased to announce that preliminary studies using eletromotive drug administration (EMDA) have demonstrated encouraging results in the treatment of Peyronie's Disease. Dr. Carroll has found that the use of EMDA is especially effective in the treatment of the early stages of this pathology....
I've an opportunity to try verapamil injections -- 6 every other week -- while taking viagra, pentox and l aarginine. Any experience with this?
Perigrine:
There is a lot of information on this forum elsewhere about the verapamil injections. Many guys have tried them with some success and others with no success. I did 12 of them only to get more nodules and plaque from them. You should search back through the topics to find more from others.
Try doing a search engine by the topic of verapamil injections. It should bring up a whole bunch of posts about verapamil.
Regards, Old Man
I'm considering injections of verapamil (6 every two weeks) in combination with viagra, pentosyphlene and L-Argininge. It's a 12-week process at a major university. Any experience of improvement with this or similar procedure?
this post moved from the "Improvement" topic by Hawk
I know of no one that has used Verapamil Injections (VI) in conjunction with the 3 oral treatments.
There is a survey on the PDS website showing responses from a VI survey.
Although VI has questionably results alone, I would be tempted to give it a try.
There is an abstract on the web on PubMed Central of an article by Jalkut, Gonzalez-Cadavid and Rajfer, Department of Urology, UCLA. (Rev Urol, Summer 2003) "60% had an objective decrease in curvature...." w/ intralesional verapamil. I think the injections were accompanied by the oral viagra, pentoxyphylene, and L Arginine.
Can you post a link right in your post?
Also look at our unscientific survey.
The website is: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1473022
Doesnt topical Verapamil work??
http://www.pslgroup.com/dg/1ce5c6.htm
Hi Crook,
Welcome to the board!
Well, our own (admittedly unscientific) survey indicates that Topical (or TransDermal) Verapamil (TV) has very limited if any success. I think you can find a link to the surven on the 'Recently Diagnosed' section.
I'm not sure of this Dr. Fitch, but PDL makes money (by charging a LOT of money) by selling Topically applied Verapamil. As such, I'd take any claims of success from them with a very large grain of salt!
Steve
ComeBackid,
I also did the iontophoresis treatment and didn't notice any improvement. The down side (besides the not insignificant cost and the general wierdness of running a minor current through your penis) was that I found it difficult to do iontophoresis and be as diligent about taking my potaba, which I think seems to help in my case.
I wonder if there are enough people who have tried iontophoresis to get some survey results?
JW
Quote from: pudder135 on August 29, 2006, 11:54:45 PM
Tim,
After seeing our own poll results form the verapamil injections I have long pondered was it simply the needle that made the condition slightly get better. "slight improvment," was the common good response from people. The majority in our poll seemed to not improve or get worse, while a few slightly improved, and almost no one healed or got really better. This leads me to believe that the needle injections maybe have slightly broken up some of the hardened tissue and plaque for a slight improvment, with the verapamil doing virtually nothing. These needle injections may have acted as a minor lariche like technique.
Look at the Iontophoresis, no results for me and Tim, and now a spanish study citing that no one got better after decadron and verapamil usage. I've always had doubts about the PHYSION company, look at their cheesy website? I bought the machine out of hope and the successful studies that were out there. I think the issue here, and this is just my gut feeling, is an issue of integrity in this case. For every REALLY GOOD doctor like Tim, how do we know there isn't a cheating lieing son of a #@$@# out there? I must remind everyone that another company had a product they claimed worked, Dr. Fitch even published a report citing high efficacy rates, speaking of PDLabs...
ComeBackid
Steve,,I've been silent for sometime because of other health problems, but i must jump in here and tell everyone again that i had very good results from using Topical Verapamil....I was very badly bent and twisted like a donut and i used the topical for 5 months and it brought me back to about 85% straight,,,a year later i went back on it for a whole year and it completly broke up my plaque and just left me with what seems like scar tissue...I'm straight enough for intercourse and no pain....And yes i did purschase my stuff from Peyronies Disease Labs back then and it was expensive but my insurance did pay for most of it because my URO had wrote a letter to the ins company stating that peyronies does cause ED and so there fore they covered most of my expensenses....I know that there is a lot of negative input on the Topical,,,but mine was positive,,,,,,,,KImo
Quote from: Steve on March 13, 2007, 03:02:48 PM
Hi Crook,
Welcome to the board!
Well, our own (admittedly unscientific) survey indicates that Topical (or TransDermal) Verapamil (TV) has very limited if any success. I think you can find a link to the surven on the 'Recently Diagnosed' section.
I'm not sure of this Dr. Fitch, but PDL makes money (by charging a LOT of money) by selling Topically applied Verapamil. As such, I'd take any claims of success from them with a very large grain of salt!
Steve
Steve,
How far along (from inititial injury/diagnosis) were you before you began the topical verapil treatement, and how severe was you Peyronies Disease? (bed, indentation, hourglass, loss of size, loss of erections, etc.") if I'm not being to personl asking here!
Hi Jake,
Well, we do get kinda personal around here--it's the nature of the beast!
I started with Topical Verapamil (TV) about about 5 months after the injury that caused my Peyronies Disease, and about 3 months after the symptoms appeared. What caught my attention was a sudden appearance of a 70 degree upturn right behind the Glans! I'd never measured length before (or at least never remembered any measurments ;) ) so I don't know if I've lost length (probably, but then again, how do you measure around the curve? On the top (shorter I'm sure), on the bottom (maybe the same), or somewhere in the 'middle'). After I started the Verapamil Injections (VI), I noticed the start of some waisting/hour-glass deformation. As far as erection 'quality' goes, it seems to be about the same as before Peyronies Disease started--except for the bend and hourglass!
As you can see from my signature, I haven't seen any improvement from the TV or IV, and now I'm on the long-term VED (Vacuum Erection Device) treatment, but I still haven't seen any improvement from that either. Bummer :(
Steve
Hello.
I am obviously a "newbie" but, I gotta say, there seem to a whole lot of us either viewing as members or as guests. I hear 3-4% of the male population is affected. Judging from what I've seen here over the past month, there are a lot of unreported cases.
Anyway. I'm here to ask a question about injections. I have had a series of 6 shots through the VA here in Minneapolis & I'm trying to decide whether or not to continue. I believe that there has been improvement in the "hardness" of the plaque but see no change in my curvature. Is this typical?
I'm also seeing a private urology group physician who is aware of the injections but doesn't give them. He's not trying to talk me out of continued shots but also is offering iontophoresis as an alternative.
I'm not asking to be told what to do here but would appreciate any feedback in support or otherwise of both approaches.
Thanks & thanks to all who make this forum possible. I can't express how much education I have received.
As a final note, I recently started seeing a much younger woman & we had a teriific attraction from the start. I finally screwed up my courage to tell her about Peyronies Disease &, just as has been stated many times by both men & women who write in, she accepted it as less important to the future of our relationship than I would have imagined. So often, our shame is within our own heads & bears no connection to reality.
Alan
Bon Jour Voulevous (sorry, that's the extent of my French).
Welcome to the forum -- you've come to the right place for information/suggestions/a shoulder to cry on. Also, congratulations on discovering that women really can be understanding :D.
As far as the injections go, I went through 12, and never saw any effect (other than some really bad bruising), I think others may have had some more positive results. Also, although I wanted to start off with Ionto, my Uro was unfamiliar with it. Now, here on the forum, I see that those who've used it haven't seen the results that they were expecting, so maybe I didn't miss out on anything there. Then again, nothing I've personally tried has yet to show any positive results, so maybe Ionto might do something ???. Anyway, I'm sticking with the VED right now to give it a good long chance to do something.
Good luck in your journey.
Alan,
This is Hopeful..,I would love to find a true uro that has used IONTOPHO.. can you please post his name and contact info..
Hopeful
Quote from: voulezvous on March 30, 2007, 01:31:25 PM
I'm also seeing a private urology group physician who is aware of the injections but doesn't give them. He's not trying to talk me out of continued shots but also is offering iontophoresis as an alternative.
Quote from: voulezvous on March 30, 2007, 01:31:25 PM
..... So often, our shame is within our own heads & bears no connection to reality.
Alan
Welcome, Alan. Your statement is so often true. I am so glad you communicated with her. Long ago, Peyronies Disease was my dread secret. When I finally opened up and talked about it, to my surprise it was no big deal to her, so for years I had much ado about nothing, so to speak. Hiding and masking the condition is a huge source of stress and anxiety for men who have Peyronies Disease, I believe.
More on topic re: shots; not long after Peyronies Disease was diagnosed I had one steroid injection into the plaque. This was many years ago. The plaque hardness subsided during the next year or two, but I can't say if that was a result of the injection or not because it was such a gradual process. The bend did not improve during that time. I only had the one shot, and no experience with iontophoresis.
Welcome to the board... there is a LOT to read here!
Thanks to you folks who have so graciously responded.
I have scheduled another series of 6 shots. Angus, it may be that what happened with you will also be the case for me but, at this point, I'd rather see blue sky than rain. Time (I guess) will tell.
I forgot to mention in my 1st message that the private urologist also "sold" me a VED (I'm on M'care, thank God). Its the Osbon manual model but I haven't quite figured out how it works. I know that the key is to go slow. Again, my sense from everything I have read on this forum in the past is that it is not likely to hurt & may, in fact, help.....especially in stretching the hopefully softening plaque.
I'll keep you posted.
Alan
Quote from: voulezvous on April 03, 2007, 11:48:48 AM
....I forgot to mention in my 1st message that the private urologist also "sold" me a VED (I'm on M'care, thank God). Its the Osbon manual model but I haven't quite figured out how it works...
You need to camp out in the VED thread for information on the VED protocol that a lot of us use. It would be a good idea to read the Highlights of VED and Other Contraptions post in the Highlights section of the forum. If you use the Search function in the VED main thread you can find the protocol and get most of your questions answered; of course you should read the whole thread, but it may take you a while. If you have questions, ask away in the VED thread and you'll get useful, informative answers from members.
How do you buy Topical V? I will search the forum for more information but thought I'd ask you since you seem to be familiar with it.
No statistical difference between verapamil and saline:
http://www.urotoday.com/42/browse_categories/erectile_dysfunction_ed/verapamil_versus_saline_in_electromotive_drug_administration_for_peyronies_disease_a_doubleblind_placebo_controlled_trial.html
Kenno, as far as i know you need a prescription from your URO to get it. When i got it , it came from Peyronies Disease Labs in San Antonio, Texas....I know that a lot of the men don't believe in it, but it did work for me, i also did take a natural vita-E with it,,while on the topical i was taking 800 iu a day...I found the best price on the natural E at GNC.....I buy all my vitamins and supplements there....,,,,,if i can help in any other way just send me a PM and i will try to be of help,,,,,,Kimo
Quote from: kenno on April 11, 2007, 12:22:55 PM
How do you buy Topical V? I will search the forum for more information but thought I'd ask you since you seem to be familiar with it.
Latest update I got by searching for new article on Peyronie's Disease weekly:
AU Russell S. Steers W. McVary KT.
FA Russell, Shane. Steers, William. McVary, Kevin T.
IN Department of Urology, Feinberg School of Medicine, Northwestern
University, Chicago, IL, United States.
TI Systematic evidence-based analysis of plaque injection therapy
for Peyronie's disease.[see comment]. [Review] [57 refs]
CM Comment in: Eur Urol. 2007 Mar;51(3):601-3; discussion 603-4;
PMID: 17084959
SO European Urology. 51(3):640-7, 2007 Mar.
AB OBJECTIVE: We evaluated the peer-reviewed urology literature for
intraplaque injection of medication for Peyronie's disease and
assessed the quality of studies via rigorous evidence-based medicine
criteria. METHODS: We performed a search of peer-reviewed literature
looking at all agents used to treat Peyronie's disease by
intraplaque injections. These were then evaluated using the Oxford
Centre for Evidence-Based Medicine criteria, which ranks studies
from strongest (level 1) to weakest (level 5) strength of evidence.
RESULTS: Of the 19 studies found involving injection therapy for
Peyronie's disease, 17 showed positive results. Six studies using
injectable corticosteroids were identified and though all showed
positive results, they were of level 4 quality. Two collagenase
injection studies (one level 4 and one level 2 study) were
identified, both of which showed positive results. All four
verapamil injection studies found (three level 4 and one level 2
study) showed positive results. Seven papers involving interferon
alpha2-beta injections were evaluated (six level 4 and one level 1
study), five of which showed positive outcomes and two of which
showed no significant benefit. CONCLUSIONS: Ninety percent of the
studies regarding Peyronie's disease showed positive outcomes.
Unfortunately, most of these have not offered convincing
evidence-based data, with only one positive study meeting level 1
Oxford criteria for clinical efficacy. Standardised outcome measures
were not used, making comparisons difficult. These results reveal
the need for the development of validated outcome measures and
well-designed controlled trials to determine optimal therapeutic
intervention for this disorder. [References: 57]
My Uro prescribed Topical Verapamil from PDLabs. I am willing to make the $200/month investment if this treatment bears promise.Any testamonials out there...one way or the other ?
IEDCL,
There are TONS of comments on topical Verapamil and PDL Labs on this forum, including a topic specifically on PDL Labs. I suggest you read this topic and the PDL Labs topic. You can also do a search on either TV, Topical, or PDL. You will find plenty.
I've had some type of Peronies' for 2 or 3 years now. My Uro calls it a congenital form, with no real plaque at first and no trauma that I can remember. I started out with some curvature, then an indent which now forms a band about half way around, and creates some waisting. Things have developed fairly slowly for the most part. I'm still functional sexually, but have lost a little length. Then I developed a small lump or plaque, so my Uro said it was time for a verapamil injection. The next time I had an erection after the first verapamil injection (less than 2 weeks later), I noticed that the waisting had progressed a lot. Now it was also on the other side, almost encircling the whole penis.
I looked at all the posts here, and noticed that nobody seems to keen on the injections. Read one in particular from Hawk that sounded similar to my situation. I saw your survey too, and it doesn't look too good, although there are not a lot of responses. Anybody else had this problem? And Hawk, what direction did you take after that experience? I'm also taking Vitamin E, Carnitine and using topical verapamil. After being quite stable for a long time (or at least progressing slowly), things are going downhill very quickly, and like a lot of people who post here, it worries me.
I've been on anti arrhythmics and blood thinners for a few years, and I have a suspicion that the Peyronies is tied into the decreased blood flow to the penis from the anti arrhythmics. I've also been taking Viagra to counter the anti arrhythmics, so I wonder if it didn't play a part in this. But I can't find a doctor who agrees with any of this. Don't know if anyone else has any of these suspicions.
thanks
No No No :o
I was not there with your doctor. I will not judge. Sometimes doctors tell us what they think we can understand. I used to have a doctor that talked to me like I was an idiot. He misdiagnosed me and I called him on it ( in my usual kind manner.... no, honestly). Needless to say, I changed doctors. Sometimes they rattle of technical jargon until its hard to understand. Often times that is medical double talk. Whatever the case, there is no congenital Peyronies Disease. There can be a congenital curve. There are a host of things that can go on with Wee Winky. You could have had a congenital curve and later developed Peyronies Disease.
It is important for doctors to understand the process of Peyronies Disease and use the proper descriptive language.
Doug, I'm not going off on you in the slightest. If a doctor actually said (and literally meant) that crap, anything that followed would be suspect.
Liam
Doug - I am assuming when you say anti arrhythmics you mean beta blockers. When I mentioned that peyronie's is a potential side effect of toprol, I had to show my cardiologist this info in the Physicians Desk Assistant. I tried to get off toprol and started taking verapramil 360 mg. Unfortunately, because of the high dose I had to take along with lipitor and more importantly 2 grms of niacin for my cholesterol by liver shut down. Much to my chagrin I am back on toprol. My urologist said he doubts it causes it peyronie's but said that the reason it is in the PDA is because it has a fibrotic effect. Alan
Hi All,
Here is the latest update I got pushed to me via email on verapamil. The upshot is (again) that it seems to work, and that it works better over a long time. What I did not get out of this study abstract (I cannot access this journal online) is A) how it stacked up against the "weak" calcium channel blockers, B) what the demographics were in the groups (ie age and length of illness), and C) how they measured erectile quality.
Still - this suggests that patience is a virtue when it comes to verapamil. It also suggests that Texas continues to push this treatment - making me wonder what the connections are between PDL labs and this research group., if any.
Tim
AU Fitch WP 3rd. Easterling WJ. Talbert RL. Bordovsky MJ. Mosier M.
IN Urology Consultants, P.A., San Antonio, TX, USA.
janice@urologyconsults.com
TI Topical verapamil HCl, topical trifluoperazine, and topical magnesium sulfate for the treatment of Peyronie's disease--a placebo-controlled pilot study.
SO Journal of Sexual Medicine. 4(2):477-84, 2007 Mar.
AB INTRODUCTION: Transdermal and intralesional verapamil has been
reported to be useful in the treatment of Peyronie's Disease. This
study evaluates a topically applied calcium channel blocker
(verapamil hydrochloride 15% gel), a topically applied calmodulin
blocker (trifluoperazine), and a topically applied weak calcium
channel blocker (magnesium sulfate), each incorporated in a
transdermal vehicle. AIM: This pilot study was conducted to assess
the efficacy of a 15% verapamil gel applied topically to the penile
shaft twice daily for the treatment of Peyronie's Disease. MAIN
OUTCOME MEASURE: To assess improvement in curvature, plaque size,
resolution of painful erections, and improvement in erection
quality. METHODS: Two simultaneous, three armed, double blinded,
placebo-controlled studies were conducted. After randomization into
one of four groups, patients were treated for 3 months. At the end
of 3 months' treatment using blinded drug, each patient was treated
with open label topical verapamil for 6 months. The studies were
completed after each patient had been treated and evaluated for 9
months after randomization. RESULTS: Fifty-seven patients were
randomized. In total, 94.4% of patients treated for 9 months with
topical verapamil experienced improvement in curvature with an
average percent curvature change of 61.1% compared with 43.6%
curvature improvement at 3 months. At 9 months the average percent
plaque change was 84.7% compared with 55% at 3 months. Pain
resolution at 9 months was 100% compared with 87.5% at 3 months.
Patient perception of erection quality also increased at 9 months to
81.8% compared with 72.7% at 3 months. CONCLUSIONS: Topical
verapamil gel proved effective in eliminating pain on erection,
decreasing the size of plaque, decreasing curvature, and improving
erection quality in patients with Peyronie's Disease. Treatment
results improved significantly after 9 months' treatment as compared
with 3 months' treatment.
Tim,
Good post! It does raise a host of questions however.
Also, can you shed some light on the term "armed" as used in the sentence
QuoteTwo simultaneous, three armed, double blinded, placebo-controlled studies were conducted.
oh sonofabitch. my uro is part of the office that conducted that study. I'm gonna have to give him a piece of my mind for not telling me about it.
After 6 weeks of waiting I finally got to see the doctor here in Atlanta that Dr. Levine suggested I see. I have agreed to go through a 10 week Verapamil injection program. He says he uses enough numbing agent that it shouldn't be painful. Dr. Ritenour says some people respond to Verapamil and some don't.
:o Just be ready for that 'numbing' shot! Unless they apply some kind of topical first (my Uro didn't), you sure do feel it. As I remember, the Verapamil shots still are not 'painless'.
Hope you have better luck with your shots than I did--12 shots semi-weekly, and no change at all that I could see (other than some really ugly bruising a couple of times)!
Steve
are shots really much more effective than iontophoresis? i'm currently going through my second cycle of iontopheresis and quite glad I'm being given verapamil that way rather than having to take shots ...
Steve and meanmrmustard:
The following is just my personal opinion and position of verapamil injections:
1. I had numbing shots with the first one or two when the schedule was started. I soon realized that the numbing shots were just another puncture into the area and in turn amounted to sometimes three or four "invasions" into the corpus chambers, etc.
2. After about 5 or 6 of the injections, some with numbing and some without, I developed a nodule for each and every injection I received. So, my uro and I decided that after 12 of them, they should be stopped and not cause more nodules. Some of the nodules "joined together" and caused more plaque to form.
3. Research on several forums for verapamil treatment therapy convinced me that they were not for me if I was going to get more nodules and/or plaque from them.
So, as I said, the above is basically the bottom line for me on taking verapamil injections. I would recommend that anyone who has a high threshold of pain not take the numbing shots. This, of course, would reduce the number of invasion of "needles" into the penile tissue. If one just has to have the numbing shots, use only the smallest amount to deaden the pain, etc. IMHO, any invasion of the penile tissue can aggravate the Peyronies Disease symptoms.
The above is just my considered opinion after taking at least 12 verapamil injections for my Peyronies Disease. And, it took quite a bit of other therapy sessions to eliminate most of my Peyronies Disease.
Old Man
MMM,
Let's see...12 shots and no discernable improvement...I don't know...is Ionto more effictive? At least it's not as painful (or so I've heard).
Of course, I'm speaking only from personal experience--I assume that VI has helped someone ??? somewhere :-\ just not me :'(
Followup to Old Man:
Yeah, after about half the injections, I noticed the waisting beginning to occur. My Uro assured me that this was a 'normal' progression of Peyronies Disease, and not a result of the injections (yeah. right). Now, a year later, I can definately detect some deep scaring in the area of the injection sites. So, bottom line, if someone asks me my personal opinion on VI, I'd recommend to try another treatment--VED isn't invasive, and is relatively painless (although as yet, it hasn't helped me either).
I saw the survey for Verapamil injections on this forum and it didn't look too good, but my doc is working with one of the top Peyronie's disease doctors around and it is part of what he recommended. I'm hoping that along with the Pentox, L-Arginine and the traction device I'm using my outcome will be different. I guess I'll find out over the next couple of months.
Chad
I have seen where some people think that the injections themselves were causing more scarring and it is definitely a concern. My Peyronie's appeared about 6 months ago and my doctor along with Dr. Levine are for early intervention with Verapamil injections being PART of the plan to treat, not cure, Peyronie's. I really appreciate the warnings, but this new Urologist I'm seeing really has my respect and confidence. I'll post the outcome whether it's good or bad.
Chad,
You would provide an invaluable service to keep all of us updated. While there are many warnings and discouragement with VI patients, reportedly there is some success. i am also not convinced all VI is equal. Technique may account for a big difference. Also, the combination of traction, arginine, etc may be a key. If you make some OBJECTIVE starting assessment of: length, girth, and curve, and keep us informed it will help answer such questions for thousands.
Good Luck !!!
Pardon the pun...allow me to "inject" my thoughts on shots.
I had a series of 10 (out of 12 suggested) also on a bi-week basis @ the VA hospital here in Minneapolis. No discernable improvement...in fact, as stated by others, more plaque then ever.
One of the memorable comments I recall from one of the urologists was that it was like try to inject "into a brick" & he could not be sure that he was even going into the scar material. That did it. If they can't even be sure where the needle is going (oh yeah, "watch that you don't hit the urethra" was another comment to remember), then I am outa here!
I am meeting with a private urologist next week to discuss implant surgery.
Can you please let me know what IONYO protocol you are using? Is it www.physion.com ?- Ar eyou doing it yourself or going to a doctor.. if yourself- who prescribd for you.. what kind of success??- Please
Hopeful
Quote from: meanmrmustard on June 04, 2007, 05:06:08 PM
i'm currently going through my second cycle of iontopheresis and quite glad I'm being given verapamil that way rather than having to take shots ...
12 sessions, during four weeks: 2x a week, then weekly. I am going to a doctor in Spain, where I'm currently residing.
as I told in previous posts, I most certainly don't have Peyronies Disease, but something that looks like an until now unexplained cronic inflammation, which is why I'm not competent to talk about the effects of Ionto on Peyronies Disease. what I do note is improvement of my glans, lesioned 5 yrs ago (increased sensibility and more fullness - flaccid as well as in erect state). furthermore a fuller hang and slightly better erections, but the thing with the erections is, that the improvement is noticeable mostly only the same day that i received treatment. this observation actually made me get another blood-test including CRT-levels among other things (results haven't arrived yet), because I figured having some kind of infect that requiered antibiotica. sorry to get off topic here and hypothetical once more ... I know that these kind of infects and inflammations, like epididymis or orchitis, cannot cause ED, my theory is the following: bending penis sharply in my pants caused some trauma in my penis, lesions that would maybe heal on it's own normally, however, the healing process was prevented by inflammation/infect.
to everyone applying to me once more to see a doctor instead of doing self-diagnosis, please reread, cause I did see a doctor. the rareness of my symptomts leaves them perplexed, making me feel forced to investigate on my own.
As part of the 3 pronged treatment plan I got my first Verapamil injection today. The numbing agent injection was less painful than Novocaine injections I've gotten at my dentist. I really couldn't feel the Verapamil injections. The worst part was before the injection when the nurse squirted my crotch full of cold Betadine. It's about 5 hours since the injections and my penis feels a bit sore. I was told I could resume using the stretching device tomorrow.
Last week I had the Doppler ultrasound and other measurements performed. Blood flow to the tip was still good which the doctor said is a problem with P.D. I know what degree my curve is now. This was done at prestigious university clinic which is good, but I had an audience. There was the nurse that did the ultrasound, my doctor and two urology residents. A liver ultrasound is one thing, but having an induced erection for about 45 minutes in front a small group of people was pretty embarrassing. :-[
Quote from: chad on June 25, 2007, 10:13:04 PM
having an induced erection for about 45 minutes in front a small group of people was pretty embarrassing. :-[
Depends entirely on the group of people ;)
Quote from: Hawk on June 25, 2007, 11:07:16 PM
Quote from: chad on June 25, 2007, 10:13:04 PM
having an induced erection for about 45 minutes in front a small group of people was pretty embarrassing. :-[
Depends entirely on the group of people ;)
true that
Hey guys:
Try this one on for size.
During the early days of my prostate cancer battle, I agreed to let my urologist give me the sono gram and biopsy tests while naked in front of about 25 urologists which included many women.
Kind of embarassing at first, but then again, I did agree to do it in the interest of teaching others the procedure.
So, whatever it take in the interest of helping others.
Old Man
Yesterday was my second set of shots, very slight bruising at the base of the penis. Again, the numbing shots weren't really painful & I couldn't feel the Verapamil injections at all.
I like my doctor a lot, but I'm still not crazy about being nekkid from the waist down in front of people. I had a different nurse sterilize me while a new resident watched and he looked on as my doctor did the injection procedure. I'm sure it means nothing to them but I wish they would at least ask if I was OK with it. Maybe I would charge per resident viewing or at least negotaite a discount on my bill. ;D
Chad, I see what you mean. You do look a little embarrassed. I was just looking at a few pictures of you during the procedure that someone posted on the internet. Musta had a camera phone.
Relax, just a little sick humor ;)
Here's one for you...
My girl friend text messaged me while I was getting my 8th shot:
"Is the dick dr. needling your noodle?"
Everyone had a good laugh....even Dr. Dick (his actual 1st name)
i had 5 injections spaced roughly every two weeks. absolutely no positive change, but i did get worse.
ps- i'm new to posting things here and i'm just trying to figure out how this whole message board works, so if this doesn't go where it's supposed to, forgive me!
NAS,
You are posting just fine. Welcome to the ranks of those that actively contribute to the PDS by actually posting comments and questions. It is the only thing that makes a support forum work.
Regards
Hawk
I found the title misleading to say the least. More get worse than get better is the bottom line that I see. Moreover, without a control group to say how many would have gotten worse anyway (or better - sorry Liam), it is hard to say that Verapamil does anything to help Peyronies Disease.
Tim
**********************************
AU Bennett NE. Guhring P. Mulhall JP.
FA Bennett, Nelson E. Guhring, Patricia. Mulhall, John P.
IN Department of Urology, Weill Medical College of Cornell
University, New York, New York 10021, USA.
TI Intralesional verapamil prevents the progression of Peyronie's
disease.
SO Urology. 69(6):1181-4, 2007 Jun.
AB OBJECTIVES: To define the impact of intralesional verapamil
injection therapy on penile deformity in men with Peyronie's
disease. METHODS: Patients underwent a total of 6 intralesional
injections of verapamil. Penile deformity was assessed at baseline
and 3 months after the last intralesional injection of verapamil
during penile erection after the administration of intracavernosal
medication. Measurement was recorded using a goniometer at maximum
penile rigidity. Endpoints included change in magnitude of
curvature, stretched penile length, penetration ability, and
resolution of pain. RESULTS: Ninety-four consecutive patients met
all inclusion criteria. Mean (+/- standard deviation) patient age
and duration of Peyronie's disease at time of baseline deformity
assessment were 44 +/- 18 years and 5.2 +/- 2.7 months,
respectively. At baseline 86% had dorsal and 14% lateral curvature.
The mean curvature and stretched flaccid length were 50 degrees +/-
28 degrees and 12.6 +/- 3.1 cm, respectively. At the follow-up
evaluation, patients were 5.2 +/- 1.8 months after their last ILV
injection and were 11.7 +/- 4.2 months after the onset of Peyronie's
disease. Eighteen percent of patients had improvement of curvature,
60% were unchanged, and 22% worsened. Pain resolved in 100% of
patients. CONCLUSIONS: In response to intralesional verapamil, a
minority of men experienced improvement in penile deformity;
however, the majority of patients had stabilization of their
deformity. This information may permit clinicians to give realistic
expectations to patients considering intralesional verapamil
therapy.
The fact that an attempt would be made to draw positive conclusions where:
Only the minority of cases showed improvement
More got worse than improved
change in magnitude of curvature or penile length of the improved or worsened category were not reported
a small majority had no change
Pain was a reported factor - resolution of pain is so universal that it always seems used to skew results.
there was no randomized control group for comparison
I find this study and the conclusions (actually the biased heading) somewhat astounding.
These results are not much better than our unscientific patient survey assessing VI http://www.peyroniessociety.org/survey_ilv2.htm
Keep in mind there are several drawbacks to such surveys
1. Patient self-assessment usually favors inflated reports of improvement
2. Those surveyed belong to a forum dedicated to fighting a disease (diminished reports of improvement)
3. A survey is not a study. As items 1 & 2 indicate, such a survey has no controls, nothing is randomized.
I imagine the results woul be the same. The title was very misleading.
You know, that report kinda makes me upset. These doctors know better.
I had my 6th Verapamil injection 2 weeks ago and today my urologist will induce an erection and measure my curve. The doctor has the previous measurement from the Doppler Ultrasound so we'll see. If there is a change in curve it must be very small. So it will be my decision today whether to move forward or quit. I know how people on this forum feel about Verapamil, but I'm really torn. Maybe my condition would be worse if I hadn't started the injections? The doctor always said his goal was to make the plaque like swiss cheese, could 6 more help? ??? :-\
D
Quote from: dahc on September 17, 2007, 11:45:02 AM
The doctor always said his goal was to make the plaque like swiss cheese, could 6 more help? ??? :-\
D
Answer: Yes it could help, it may do nothing, yes it could make things worse.
I know that answer is almost useless but asking a bunch of guys does not do much to change the limited data you have to go on. I wish there was more certainty in either direction.
I take it you have seen the Mulhall study and our PDS survey
The interim analysis is good - your doc is thinking. If there is no progress, then you have your decision already (perhaps). If you are better you may decide to go for it and see if more is better.
Tim
I have read the PDS survey and Dr. Mulhall's study, not very incouraging. I read the PDS survey before I started with the shots. I guess I wanted to believe that it would be different for me. :-[
Tim, I had to ask my urologist to check things out after 6 shots before proceeding. He usually gives 10 injections in a 20 week period.
I had my evaluation yesterday and my curve went from 44 degrees when the doctor originally measured to 26 degrees. I would have guessed little to no change. To be honest my really firm erections are few and far between these days so it's really difficult for me to check things out. When I am erect what I notice more than anything is a loss in length from my healthy penis size.(Still less than 1 year ago so I remember it well)
I've had 6 Verapamil treatments, used the FastSize for at least 4 hours a day and taken 500mg of l-arginine twice a day. I was supposed to have been taking Pentox also, I tried on 3 separate occasions and couldn't handle the side effects.
The doctor made the choice to wait 12 weeks and re-evaluate me and decide whether to continue with more Verapimil treatments.
D
P.S. I questioned my doctor again about the effectiveness of Verapamil and he told me that he has seen
men go from having a pronounced curve to no curve and everwhere in between. I'm not trying to
advocate Verapamil, but maybe there is some skill that some doctors have in doing the treatments.
My doctor always says that he is making Swiss Cheese out of my plaque.
Don't apologize for reporting your results or what the doctor said. We don't filter evidence to support our conclusions here. We assess evidence to reach conclusions.
I am happy for your results. I do doubt that your uro is more skilled at VI than those preforming the study, and who have taught many other urologist how to administer VI.
I remember Hawk's rumination that the needle may be responsible as opposed to the drug.
Could be just the needle. I guess there would need to be double blind test to know for sure. Can you imagine anyone volunteering for that one. ;D
D
dahc
If the doc is using the needle to make swiss cheese of your plaque, he may be accidentally doing the Leriche technique, and the verapamil may only be incidental.
Quote from: flexor on September 20, 2007, 12:51:04 PM
dahc
If the doc is using the needle to make swiss cheese of your plaque, he may be accidentally doing the Leriche technique, and the verapamil may only be incidental.
That Leriche technique has always intigued me. Does anyone have any further information about it?
Cheers.
I emailed 2 doctors known for using the LeRiche technique. One responded and said to contact the other. The other has not responded.
Use the search to find their name. Maybe you will have better luck than me. A copy of my email is in the forum.
Has anyone tried topical Alprostadil????
Not sure this belongs in this area, as topical Alprostadil is designed for treating ED. IT causes genital burning, so it has not exactly caught on as a treatment of choice for ED.
Tim
tman:
Alprostadil was also used in the penile injections for erections. The ED injections have caused many of us to have more Peyronies Disease symptoms. So, IMHO and bottom line advice, don't use it in any form.
Old Man
QuoteKimo
Voting Member
Re: Open Questions on Peyronies Disease (That won't fit under any of our current topics)
« Reply #549 on: Yesterday at 11:18:51 PM » Quote Modify Remove Split Topic
--------------------------------------------------------------------------------
Steve,,,,I used the Topical Verapamil and it worked great for me. I know that no one wants to believe me, but i'm the one who used it and it worked...
When i first got Peyronies i was twisted and bent like a ugly donut and my plaque was the size of a quarter..I started using the TV and it took about 3 months before i noticed any change and then it was all of a sudden and by the end of the 5th month i was almost straight but left slightly bent up..My plaque was softend up or broken up but still there...A year later i went back on the topical V to see if it would do anymore for me..I was on it for a whole year, using it 2 times a day, faithfully...At the end of a year my plaque was all gone and no more pain when getting an erection....I could always feel it penetrating the skin [ tunica ] and i know that it really did help me...
Now i know that it doesn't help everyone, but it does help some..I have talked to other men over the past 10 yrs who have used it with success. If i hadn't seen any results after 6 months to a year then i would agree with you, but i was willing to go for the long term to give it a try and i'm glad i did....I have no reason to promote this product or tell a lie other than it really did help me and i'm grateful for it....
This is just my humble opinion and all i want is to be a help to others.....
Kimo
I forgot you had that much improvement. In another post you mentioned a deep nodule that TV would not reach. Has ther been any change in that?
Thanks for the post!
Liam,,,,,that nodual came on a few months ago, it was recessed back behind my pubic region and it did hurt a lot for awhile, usually during intercourse...It has stopped hurting and doesn't bother me anymore..It is still there and because it doesn't seem to be doing anything i'm not worried about it, ,,it didn't cause any bending i guess because of where its located...
My first plaque area was about half way up my shaft and that is gone, only a little scar tissue remains and i'm slightly bent upwards, kinda nice for sex, it hits the right spot...The corona or tip of my penis used to be kinda numb for a long time, but after the second round of TV when the plaque all dissolved then thats when my feeling all came back too....
Kimo
Kimo,
Have you had a chance to see Dr. Levine's webcast "Non-Surgical Treatments for Peyronie's Disease"?
Scroll down on home page: http://webcasts.prous.com/AUA2007/article.asp?AID=87&CID=YY&CLID=2
I'm just trying to wrap my head around what he has to say about Topical Verapamil and your account of severe Peyronie's deformity almost being healed by TV. I have no doubt that your story is true, I just wonder if there could be any other explanation of your correction. ??? Were you doing VED or supplements at the same time?
Not trying to be an a**hole, just confused and also happy that you've had such a significant correction.
D
I reviewed the Levine presentation and was wondering if anyone knows anything about liposomal superoxide dismutase gel?
Also, anyone using ionto and what kind of results are you getting?
Dahc,,,,The only other thing i was talking was 800 iu of a natural vita-E which i bought at GNC.....My URO said it was his belief that it would help the TV to do it's job better, so i took it for a long time, about 4 to 5 yrs...One thing i will say about the vita-E , after being on it for so long i started having a lot of dizzy spell's and i finally heard that it was a blood thinner, so i quit taking it and my dizzy spells went away.....I think i just took it for too long...
I have a VED but have never used it, only maybe practised with it...I stated that i used to TV for 5 months the first round and it brought me back to about 85% straight but still left the quarter size plaque which was really hard to the feel..The second round which went for 12 months broke up the plaque and dissolved it and it is all gone...
I have another plaque recessed way back behind the pubic area the size of a dime,this came on about a year ago,,,was very painful for awhile during intercourse but finally stopped hurting and it doesn't bother me anymore..It cannot be reached by a topical so i just don't worry about it and it didn't make me bend any..
When i was using the TV i could feel it penetrating the skin and i know that's what helped me,,It didn't correct it's self, i was twisted and bent too bad and in a lot of pain all the time for quite sometime.....I had the bad bend and pain for about 6 months before i started using the topical...My URO recomended that i try it and i'm glad i did.....
Yes i viewed Dr Levine's webcast,, very interesting, i willl try to read into it more.....
YOur not being an a**hole,,,the only ones i know who fit that catagory are the one's who have treated my children and grandchildren badly..You are quite welcome to ask any questions you want....
Kimo
I'm with Phil... is there anyone out there who has used ionto recently? I remember reading the first reports years ago and watching scientific studies go back and forth on the issue. Obviously, Dr. Levine's most recent study into ionto was disheartening to say the least. I've got a doc who's willing to write my prescriptions for the treatment, but i am somewhat apprehensive about spending the $1300 that Physion's U.S. distributor charges for the Physionizer 2.0 machine and enough electrodes and verapamil mix for a full treatment cycle. It doesn't help that the successful studies (and Dr. Levine's unsuccessful study) all used the Physionizer 3.0 which can produce the 2.4 mA current while the Physionizer 2.0 available here through the U.S. physion reps only produces 2.0 mA maximum. Still, desperate men do desperate things, and I would gladly pay $1300 for a cure... I'd just like it to come with a guarantee. Is that really so much to ask? :P
--amigo
I am not certain, but I think if you read back on the topic, that both Tim and Comebackid posted quite a bit about ionto within the last year.
Do a search on "ionto" without the "", put Tim468 in as the member and be sure to check "Show results as messages"
Amigo, I'm a technical guy and if I thought iontophoresis worked I'd be doing it. I've followed the posts here and elsewhere for years and as far as I know, no one has ever gotten any benefit from it. It's pretty much a shot in the dark because no quantitative research has been done - i.e. no one knows how much, for how long, or what current and polarity might be expected to do anything.
I could be wrong, and of course I hope I am.
I did Ionto and it did not help me. Like many offered cures it has not been studied in a proper fashion IMHO.
I tried different doses, called different companies and talked to their tech people (including Physion and those who make the usual ionto pads in Utah)(forget their name).
Not much is known, but I do know that more current will not make it all better. The charged molecule either goes in or it does not go in. A longer time on lower current gives the same benefit.
Tim
Thanks Hawk, J., and Tim. The early Italian studies on this were so encouraging. *Sigh* On the other hand, $1300 buys a lot of lap dances, which is all but guaranteed to at least TEMPORARILY improve bloodflow to mi "amiguito". Anyone else interested in staging a research group - An hour of lap dances 2 or three nights a week? Maybe we could get a grant... hell, maybe they could save us a step and just give us the grant money in singles.
Interesting study...
Cavallini G. Modenini F. Vitali G. Open preliminary randomized prospective clinical trial of efficacy and safety of three different verapamil dilutions for intraplaque therapy of Peyronie's disease. [Journal Article. Randomized Controlled Trial] Urology. 69(5):950-4, 2007 May.
Objectives
To investigate the efficacy and safety of three different dilutions of verapamil used in intraplaque injections in an attempt to reduce Peyronie's disease symptoms.
Methods
A total of 77 patients (age 48 ± 9 years) with chronic Peyronie's disease were randomized into three groups, each receiving 12 intraplaque injections (1 injection every 2 weeks) of 10 mg verapamil in different dilutions. Group 1 (27 patients) received verapamil 10 mg/4 mL, group 2 (24 patients) received verapamil 10 mg/10 mL, and group 3 (26 patients) received verapamil 10 mg/20 mL. The variables, assessed before and 8 months after therapy, were erectile function (assessed by semistructured interview), plaque size, peak systolic velocity, end-diastolic velocity, left and right cavernosal arteries (assessed with dynamic Duplex ultrasonography), pain (assessed with a pain scale), penile curvature (measured using a photograph of a pharmacologically induced full erection), and side effects. Analysis of variance and the chi-square test were used to analyze the differences among the groups.
Results
No significant differences were found in the baseline values among the groups. The peak systolic velocity of the left and right cavernosal arteries was never significantly modified. The plaque area, penile curvature, erectile function, end-diastolic velocity of the left and right cavernosal arteries, and pain improved more significantly in group 3 than in groups 1 and 2. The side effects were ecchymosis, with no significant differences among the groups.
Conclusions
The dilution of verapamil significantly improved its efficacy in improving Peyronie's disease symptoms.
Tim,
Rather than research this I will expose my ignorance and ask. I take it the designation 10mg/20mL indicates only the amount of Verapamil (10mg), in an amount of solution (20 mL). I also take it that this addresses the concentration and dilution of the injected solution with 10mg/20 mL being the weakest. Am I correct in saying this has nothing to do with the volume of solution injected but only the strength or concentration of the solution?
Hawk
Hawk,
The way I read Tim's post, everyone received 10mg of Verapamil. Some received it in 4ml of solution, some in 10ml, and some in 20ml, so the volume of solution changed, but not the quantity of the drug:
QuoteA total of 77 patients...receiv(ed) injections...of 10 mg verapamil in different dilutions
It's interesting that the lowest concentration (and hence the largest volume) resulted in the most significant improvement! Perhaps it's not the drug, but the volume and subsequent 'swiss-cheesing' of the plaque (to use Dr Levine's analogy) that's causing the improvement? I'm wondering if some researcher might key on this and make another study.
Steve
Good points guys.
One way to view it is that more volume is better - for all we know, simply pumping the penis full of saline made it bigger! Seriously, there are details that need to be shared. IF, as we suspect, the only variable is the amount of saline, then why might it be better? It might be that a greater volume, injected into plaque, breaks it apart better than a smaller volume, and that the verapamil is irrelevent. Some data that use just saline for a control (versus a single dose of verapamil) suggest this is true. They say it "might increase hydrodistension and cracking of the plaques" (meaning more volume crammed into a tissue is more likely to break it apart)
I am not sure I can posit a rationale for a different concentration being better per se. Drug is drug.
Tim
Here is their discussion in the paper:
*************************
Our data support the hypothesis that dilution of 10 mg verapamil to a final volume of 20 mL with injectable saline improves the efficacy of intraplaque injections, without significantly increasing the side effects. An attempt to use a greater dilution (10 mg verapamil/30 mL) during the course of the preparation tests failed because of the difficulty and fatigue of injecting into the hard plaques. Only the plaque area and EDV significantly improved after therapy in all groups. The other variables showed a positive trend in groups 1 and 2, probably because of the low number of tested patients. Group 3 displayed significant improvements for all the tested variables.
It is accepted that by decreasing the plaques, penile deformity and pain improve because of the reduced traction on sensitive nerves and/or the anti-inflammatory activity of the drugs.10 In contrast, however, certain relationships between ED and Peyronies Disease are contradictory. Some investigators believe that Peyronies Disease may directly affect erectile function by way of venous leakage,12 endothelial/inducible nitric oxide metabolism alterations,13 and/or microstructural disorders of the albuginea,14 and other investigators have denied any association between Peyronies Disease and ED.15 Our data have shown that an improvement in pain, plaque, and penile deformity parallels the improvement in EDV and ED, but the cause of EDV improvement is obscure. High EDVs were associated with arterial ED, psychogenic ED, and venous leakage.10 Peyronies Disease might cause psychogenic ED because of pain10 and 15 and/or shame about the penile aspect15; therefore, it is unknown whether ED improvement is linked to an improvement in pain, penile aspect, and/or venous leakage.
We have no direct explanation for the efficacy of the verapamil dilution. We found no indication in published series indicating that dilution might improve the pharmacologic activity of verapamil. Verapamil inhibits secretion and synthesis of the extracellular matrix, increases collagenase and anti-transforming growth factor-beta activity, and displays antiproliferative activity.4 The progressive dilutions that we used might increase hydrodistension and cracking of the plaques. Extracorporeal shock wave therapy has been used in an attempt to crack plaques, but a recent prospective, blind, controlled trial disproved any effectiveness of extracorporeal shock wave therapy.16 Therefore, we postulated that plaque cracking induced by hydrodistension is more effective in reducing Peyronies Disease symptoms than extracorporeal shock wave therapy-induced cracking. We do not know whether hydrodistension reduces Peyronies Disease symptoms directly or by immune system stimulation. Recent studies have attributed the characteristics of biologically transformed cells to Peyronies Disease fibroblasts.17 Biologically transformed tissue growth is in dynamic equilibrium with the immune system, which interferes either specifically (ie, with tumor-specific and individual-specific effector cells [T lymphocytes and dendritic cells]) or not specifically (ie, activating endogenous reactions such as proinflammatory cytokines and macrophages). A nonspecific response was improved by intralesional injections of "inert" substances by mechanical stimulation.18 Some drugs effective in combating Peyronies Disease (propionyl-l-carnitine, acetyl-l-carnitine, and interferon-alpha-2B) have been found to boost the immune response.19 Theoretically, the efficacy of the type of needle used in administering the drug for Peyronies Disease cannot be discounted, but no mention of this was found in published reports.
Hormones were also tracked in this study to exclude patients with hormone-associated ED or those who had no ED but who had hormonal alterations that might have affected their sexual function during the course of the study.
Our follow-up was deliberately short to separate possible drug-related improvements from any spontaneous changes in disease severity. Occasional spontaneous resolution of Peyronies Disease has been reported, but these only took place over several years. Therefore, short-term variations in disease severity should help to distinguish the effect of drugs from spontaneous changes.6
The Helsinki Declaration of Human Rights does not allow for the exposure of humans to potentially dangerous therapies (ie, to not treat at all or to treat a progressive disease such as Peyronies Disease with a placebo). Therefore, the Società Italiana di Studi di Medicina della Riproduzione institutional review board did not allow the use of a placebo or untreated groups in this study. Open studies are performed as forerunners for double-blind placebo-controlled clinical trials of new pharmaceutical regimens, and our study should be considered as such.
The different injected volumes did not allow for any blinding procedure. In an attempt to overcome any possible bias from the lack of blinding, the following procedures were adopted. First, three (instead of two) different verapamil dilutions were used; because their efficacy increased from the lowest to the highest, the effectiveness of the 20-mL dilution was confirmed. Second, a single physician (G.C.), unaware of the treatment status, performed the duplex Doppler examinations, and measured the penile curvature.
The interobserver or intraobserver variability in curvature and plaque measurement assessments could not be assessed because only one physician performed the duplex Doppler examinations. Also, it was stressed that the plaque should be measured 5 to 10 minutes after PGE1 injection, during the latency/tumescence phase; therefore, only one plaque measurement/dynamic duplex Doppler session could be performed.10 An attempt to perform two or three sessions caused too many dropouts during pretesting research. Because 18 patients needed a Trimix intracavernosal injection to reach a full erection, multiple assessments of the penile curvature measurement were not considered because of the danger of priapism.
Conclusions
The strength of this report is that it presents an inexpensive and safe method for improving the efficacy of verapamil on plaques. Our findings also suggest that more studies should be executed to ascertain whether the dilution of intraplaque-injectable drugs could be extended to other substances that have proved or will be proven effective in combating Peyronies Disease symptoms.
Over the years I've seen studies from Italy showing good results with Acetyl-L-Carnitine, hyperthermia, and Verapamil. Unfortunately none of these treatments seem to work here in the U.S. - maybe it's something in the air or the water - so I guess we need to go over there. Hope to see some of you guys on the plane - I'll be wearing a pretzel on my lapel.
Or maybe we should hop a flight to Cuba, where they can cure you with bee propolis...
wolfr said in the "Traction" topic:QuoteI had a consultation with Dr. John Mulhall (in NYC) in July of 2007 and began intralesional verapamil injections in August of 2007. Dr. Mulhall's treatment regimen consists of 6 sets of injections, each treatment is separated by 2 weeks. Dr. Mulhall described the goal of this therapy to be stabilization of the plaques. He was careful to say that I should not expect the injections to reverse my deformity.
PABA does that without needles. The plaque stabilizes on its own frequently, too. Also, when the injections end, does he guarantee your plaque will never progress. I can't believe he would subject you to the shots without believing it,at least,
may improve your condition.
Man, I am getting ready to see my uro and I am really afraid to try Verapamil injections even if he wanted to try. Seems there is more against them than for them.
Tman,
You should definitely ask your urologist lots of questions before you do the injections. I didn't have a horrible experience with my set of injections, no pain and only minor brusing on 2 occasions. I think the key is making multiple passes through the plaque with needle as my urologist and Dr. Levine do.
Dac
I last posted on this board several months ago just prior to getting a series of VI (which was shortly after I was diagnosed with Peyronies Disease). I'm 33 and have a congenital curve down. The Peyronies Disease was centered toward the underside tip of my penis on both sides which led to a bend to the right. I am still on a regimen of Vit E and Vasoflow.
The injections were less than pleasant but I kept them up until the set was over. That's 6 injections...1 every two weeks.
As far as change, there has been a very slight change in the Peyronies Disease bend for the better. Pain is gone almost 95% now (more than likely a function of being 8 months into the disease). The tip of my penis is still soft during most erections.
The largest change is the addition of plaques at the left base (adds a curve to the right during soft erections but this goes away during hard erections) AND a "ridge" running along the top of my penis in a straight line for about 3/4 of an inch. Neither of these inhibit erections but the development of plaque running along the top has mostly eliminated my congenital curve down (a strange but welcome bonus for now!).
I do not think that the injections have helped in my situation.
Now, with multiple compound curves in my penis, I'm thinking of getting into the locksmithing business. There isn't a door lock that I can't unlock in less than 10 seconds.
J
Johnny, Thanks for the chuckle! We ALL need that!
Steve ask,
"I'd still like to hear from others who've already undergone injections or iontophoresis to get some first-hand results."
Read the historical post. It's easy to discover that all of this available "treatment" doesn't work and it borders on voodoo medicine. Go back and read my post on injections.
It's clear that the treatments listed here have little more chance of success than spontaneous remission.
There are at least 2 doctors(my urologist & Dr. Levine) that claim to 60% rate of improvement with Verapamil Injections. Perhaps it's their method of delivery(multiple passes through the plaque) and not the Verapamil? But to call one the few available therapies available for Peyronie's "voodoo medicine"??? I'm glad I had the shots, no pain & a little bruising twice. I was also using traction and went from a 45 degree curve to 29 degree curve, who knows what the result would have been if using only one or the other. I think at the very least the Verapimil stabilized the P.D. Since I'm only in my 9th month of this crappy disorder I consider that a plus.
I would hate to see someone newly diagnosed and perusing this site to think "Verapamil?, better stay away from that" when according to many highly respected doctors that specialize in Peyronie's Disease it has been and can be effective in some patients.
The indictment of "voodoo" medicine was not for just Verapamil, but for all the medications recommended that don't help everyone.
Pretty much everyone with a strep throat is going to improve on an antibiotic. It is really frustrating to have a problem, with all the different meds having an about 30% efficacy. Since that is the frequency of "spontaneous" remission in some reports, it is always disheartening to realize that your new therapy may not work.
In my case, not one single therapy has really "worked". However, I do believe that some of it has helped along the way:
1) VED has improved my longsatanding dorsal curvature from about 30-35 degrees to about 15-20 degrees. Based on worsening while away from it on a two week vacation, I think it has also prevented worsening of some new lesions on the left side - which are now dents instead of sites of angulation.
2) Verapamil iontophoresis helpd me when I had an acute injury during sex last year to take a developing 30 sharp angled bend to the left (about 1 inch from the tip) to no discernible angulation at all. I am uncertain if it helped in any other ways over time.
3) HGW and Cialis have helped with rigidity, which has helped reduce risk of injury and with borderline ED. Not really "Peyronie's" treatments, but relevent to what causes us to get worse IMHO.
Not sure of any effects from Vitamin E, Advil, ALC, PLC, etc.
Tim
dahc,
You are right. "Voodoo" is not accurate. Snake oil is better. Just what does "improvement rate" consist of? My Urologist claimed he could detect a change meaning improvement. I started at 45 degrees and that was how I finished. When an "improvement" occurs how could you be certain it was the injections. There is a lot of wishful thinking going on with Peronies victims.
I have also talked to Urologist who tell the truth. Injections don't work. If the likes of Levine told you that there was little chance that injections would cure you and that maybe you might see an improvement how many takers would he have. This is a lucrative revenue stream for Urologist that do it. Little effort big bucks.
Tim, you are right. Some of these crazy formulas and topicals are just laughable.
Quote from: kbmw on October 22, 2007, 12:27:16 PM
I have also talked to Urologist who tell the truth. Injections don't work. If the likes of Levine told you that there was little chance that injections would cure you and that maybe you might see an improvement how many takers would he have. This is a lucrative revenue stream for Urologist that do it. Little effort big bucks.
That is what my uro just told me Friday, he has given injections but will tell his patients that you dont know if its the injection or just improving on its own. He thought most treatments you hear of are a waste of money.
Just by following this (and other) forums over the last several years, I've concluded that verapamil does nothing. I don't mean to dismiss reports of improvement, but for every such report I've probably seen 10 reports of complete failure.
We keep hearing about attempts to "deliver" verapamil by various means - topical, iontophoresis, injection - but what I don't see is any scientific evidence that verapamil has any effect on this tissue at all, no matter how it gets there or in what quantity. Someone had the thought, years ago, that because verapamil seemed to increase collagenase production in a lab experiment, it might be useful for fibrotic conditions like Peyronie's. A good idea that appears not to have panned out in actual human bodies. Nevertheless urologists keep trying various expensive and painful ways to "deliver" this drug year after year, in the absence of any supporting research.
If verapamil injections actually worked, they'd be in widespread use for Dupuytren's contracture, where the market is huge and the fibrotic tissue is easy to see and inject.
I was prepared to get blasted with my original posting and I'm not disappointed. It does suprise me how absolutist the "Verapamil is Snakeoil" crowd is. I have read of guys that experienced a lot of pain and had terrible bruising with the injections, wasn't my case at all. If you had a bad experience or no results, I'm sorry.
BTW, If I thought I was being treated as nothing but a revenue stream by any doctor he'd be fired.
dahc, I don't disbelieve your report of improvement or rule out the possibility that verapamil had something to do with it. What I should have said is that verapamil "does nothing" in the overwhelming majority of cases. Anyone who'd read all the posts here over the years would have to conclude the same thing.
Maybe it does work, in certain circumstances, on some people; but it appears that the odds are so poor that it doesn't make sense to undergo the treatment. As always - if you gamble and win, well, then you win.
Maybe I should disclose a personal bias: on the advice of a urologist I blew about $2800 on PDL's Topical Verapamil and applied it as directed for the better part of a year; it did nothing.
J,
I did say in my post that perhaps it wasn't the Verapamil but the making "swiss cheese"(my doctors words) out the plaque. Maybe it's all technique and not so much the Verapamil?
$2800 ouch! I bought the FS extender $275 plus several new baggier pairs of pants. Not to mention supplements, co-pays and deductables on doctors visit and Cialis. It adds up fast. :P
The idea of simply perforating the fibrotic tissue enough to let it stretch is essentially the fabled "Leriche Technique" which was reportedly tried successfully in France a few years ago. Then, naturally, it sank without a trace. No one apparently does it today and the authors of the study don't reply to email.
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=15776920&dopt=AbstractPlus
I guess urologists don't want to risk going in there with a needle unless it's also delivering about a thousand bucks worth of medication.
I think we should start asking our doctors about the theory of perforations in the plaque causing improvement. Maybe, in turn, they will start talking and a buzz will be started in the urological community.
Liam, you're right. And I'm sure many of them would nod and say "sounds very interesting." The challenge would be for one of them (a surgeon, I assume) to decide to actually attempt it.
You might know that a similar procedure is now used for Dupuytren's contractures. Like the Leriche technique it orginated in Paris, but it became popular over there and has been done successfully in several European locations for many years. In the last couple of years a few U.S. surgeons have finally started doing it. Their waiting rooms are overflowing.
When I was getting my injections recently, I talked to my doc about the swiss cheese idea. He even brought up the fact that at their last conference it was mentioned several times. The main response was that it was a short lived benefit in trials. The docs say that the plaque tends to fill back in where the holes were made.
Three days after my last injection I did have an interesting 24 hours...things pretty much straightened out. I was shocked to wake up with a nearly straight woody. It continued to stay straight for the next day, but as time wore on the bend came back. Must have been either swelling just in the right spot or...i dunno.
Ahh, to dream of straight wood one day...
j
Hand surgeons raised the same objection to the needle perforation procedure: recurrence would be higher than with conventional surgery. This may be true (although I think the evidence isn't there) but that's hardly the whole story. Surgery for Dupuytren's is brutal, recovery is tedious, you're disabled for months. The needle procedure takes 20 minutes and you're good to go with just a band-aid; and it can be repeated if necessary, unlike surgery which leaves your hands full of scar tissue.
Quote from: Johnny on October 24, 2007, 03:25:57 PM
I talked to my doc about the swiss cheese idea. He even brought up the fact that at their last conference it was mentioned several times. The main response was that it was a short lived benefit in trials. The docs say that the plaque tends to fill back in where the holes were made.
Johnny,
Doctors often do what we do here, speculate, theorize, and even guess. Granted, they
may be better equipped to do so, but speculation is speculation. I know of no trials where different methods of injecting Verapamil were tested in a controlled study. I know of no controlled study comparing VI to non Verapamil injections, and I certainly know of no studies with objective imaging that show needle holes fill back in with plaque without Verapimail vs with Verapamil.
I'm going to think out loud. If traction followed perforation, even if the holes "filled in", they would "fill in differently - maybe straighter.
Quote from: Liam on October 26, 2007, 05:19:14 AM
I'm going to think out loud. If traction followed perforation, even if the holes "filled in", they would "fill in differently - maybe straighter.
Bingo.
And if the holes and tunica have a contractile process ongoing, it won't be as good.
Tim
Liam & Tim,
You read my mind!!!
My experience with Verapamil is extremely disappointing and my views on "PDLabs," the supplier are that their website is misleading at best and possibly filled with lies. Under my Urologists' recommendation I applied Verapamil for 14 moths at a cost of approximately $3000 based primarily on the claims and testimonies on their website. I endured unbelievable itch for those 14 months and it was a total waste. The way they tried to keep me on the drug was very unprofessional and disingenuous.
I'm now on the vacuum therapy.
Ptolemy,
Welcome to the forum. It is not an over statement to say that your post in "Our Histories" is inspirational. I am sorry for your experience with PDL labs.
You are not alone in your assessment. Have you seen this very interesting report? If not scroll to the bottom of the page and read it from the beginning. https://www.peyroniesforum.net/index.php/topic,328.0.html
Ptolemy - welcome to the "PDL Club", an elite group whose members have spent thousands of dollars, and hundreds of hours, applying this product as directed with no noticeable results. Sorry to say I'm a member too.
It just astounds me that urologists continue to prescribe it.
Thanks for the welcome. That was an amazing write-up of research and experience by comebackkid. I could vouch for much of his experience. Talk about a company that kicks you when you're down.
Hi All,
I came across this substance and it sounds like it may be of some benefit. As such, I decided to order a tube, and it is very reasonably priced. Buyer beware is always in order but I will post the product description and a link to the site.
Cheers.
Hirudoid
Get rid of bruises & scars with Hirudoid
Hirudoid contains a special ingredient called MPS (mucopolysaccharide) which helps improve the appearance of bruises, prevents inflammation and relieves pain & tension in the affected area.
Hirudoid is used for haematomas, softening of hard scars and inflamed veins.
Your skin relies on the presence of MPS in the tissue. The effectiveness of any skin cream depends on its absorption and scientific studies have shown that the MPS in Hirudoid penetrates the skin and is able to reach the dermal layers in effective concentrations.
HOW DOES HIRUDOID WORK?
The activating influence of Hirudoid has a beneficial effect on the appearance of scars. The MPS in Hirudoid is able to attract water and therefore loosen the connective tissue preventing a dense accumulation of the fibres which create a thick scar. Several studies have shown that Hirudoid softens scars, increases flexibility of the scar tissue, reduces redness and results in a better cosmetic appearance.
Hirudoid
Get rid of bruises & scars with Hirudoid
Hirudoid contains a special ingredient called MPS (mucopolysaccharide) which helps improve the appearance of bruises, prevents inflammation and relieves pain & tension in the affected area.
Hirudoid is used for haematomas, softening of hard scars and inflamed veins.
Your skin relies on the presence of MPS in the tissue. The effectiveness of any skin cream depends on its absorption and scientific studies have shown that the MPS in Hirudoid penetrates the skin and is able to reach the dermal layers in effective concentrations.
Hello All - I have just finished my 3rd iontophoresis w/verapamil - I am scheduled for one each week into Jan 22nd. So far all I have noticed is a burning sensation along the side of my penis where the electrode is attached but that goes away about 30 min after I leave. I don't know if I am hoping too hard but I seem to think my placque is smaller. I still have an upward curve when erect, and I will try to find a method to measure the angle to track any improvement. My URO is very insistent on the use of a VED. :-\ OLD MAN is a proponent and I thank him for his advice. I will decide before my next visit if I wish to try it. I have to travel 60 miles one way to have this treatment. Oddly enough he wanted the name of this website since I told him it was strictly a forum and not a "shill" to sell all those products that promise immediate relief if you send in a couple hundred bucks ::). Will check in again in a few weeks so many thanks for the help. HASCAL
Hello all,
i'm sorry if you have already spoken of that i dont find it , and i dont know if i am on good topic, have somedoby tried 'procaine' injections? (or just tell me the topic where it deals with it please if it has already been mentioned) , thank you
Antony,
The best was to find out is type procaine in the SEARCH feature here on the forum and see what it brings up. Also I suggest that before you post that you click on the SPELL CHECK button. If you learn to use these and a few other forum feature it will radically increase your enjoyment of the forum.
If you need any help with these, just ask.
Thanks Hawk, i will have a look.
Soxfan, whatever happened with the tube of Hirudoid cream that you ordered. Did you experience any positive, or negative, results? Did anyone else ever give it a try? I just came across the post from November, and it sounds interesting.
I read the post about Hirudoid cream and started scanning the net for information. Initially I thought it was worth trying, with claims of having carrying agents to reach deep into the skin. I came across an information leaflet which had this caution in it:
' This cream must not be swallowed or used on or near sensitive areas such as the
mouth, eyes or ano-genital region.'
Pardon my ignorance (I understand the term genitals) but is 'ano-genital' referring to anus, testicles, and penis? I was going to order some until I read that line. What's your thought on this?
I heard Mulhall say that Pentoxiphylline works in the research dishes with plaque but not as clearly in the body.
I wonder if anyone has tried iontophoresis with Pentox???
I read in the Oral Medications thread a while back about Aspercream ... some questioning whether it might help relieve the pain/discomfort associated with Peyronie's for some men.
Has anyone actually tried this? Any reason to believe it could cause any harm? I'm thinking about giving it a try.
Nemo:
Since Aspercreme does penetrate the affected areas of where is it applied, there should be no reason that it would help with the pain or discomfort of Peyronies Disease symptoms.
I would use it with caution and monitor it carefully to preclude any side effects such as redness or irritation, etc.
As to whether or not it would have any effect on the plaque, nodules and other things, your guess would be as good as anyones.
Just try it and see what happens.
Old Man
I often use aspercreme after using the pump. I don't know that it helps at all - I have used Vitamin E, aloe vera and Emu oil. All basicly allowed me to lubricate up after having been soaking in soapy warm fluids during my pumping session. Mostly it is neutral.
Tim
I think I'll give it a try then. I'll let you know my results. Just wanted to make sure it wouldn't hurt anything.
EDITED to say: Tried some Aspercreme. Can't say it really did anything, as Tim predicted. No irritation or anything, but didn't eliminate the "sensation" I've been feeling, which I presume is inflamation. Oh well, nothing ventured, nothing gained.
Does anyone know of a Urologist in Ontario, Canada who does Varapamil injections? I heard there is one near Guelph, but don't know details.
A name would be greatly appreciated.
Piper:
Suggest you try doing a Google search for a urologist in your immediate vicinity. It should bring up a list of uros or at least a site you can search for one.
Old Man
When you buy an Ionto machine from the company in Italy, who supplies the Verapamil, the company, or do you have to get a prescription from your doctor?
Nemo
When I ordered the machine, I got it as a deal with the machine and the verapamil and decadron combo that the Italian docs studied. I forget the details now. Then I did another round using different application patches (the Italian chambers didn't work too well) and using just pure Verapamil (at a higher dose too). Neither did much for me, though I do belive that a leftward bend was stopped and reversed by verapamil.
It left me thinking that an acute onset (perhaps even the first 6-9 months)might be more treatable, but longstanding disease is not - which is what the authors concluded as well.
Tim
I just talked to Dr. Carroll on the phone and ordered a Physion Ionto machine and SomaCorrect VED. Listening to my symptoms (strange sensation/soreness, indentation on the bottom), he said I probably reinjured my penis and am experiencing inflammation.
I'm going to try the Ionto, even though I know you guys didn't experience anything dramatic with it. Since Levine thinks it has merit, and I'm still in the early stages, I hope it will help in some way. Carroll feels it is good at "knocking out inflammation" so we'll see what it does for me.
I'll keep you posted.
Nemo
Just thought I'd update on this.
I received the package from Dr. Carroll yesterday. To my surprise, it wasn't a Physion Ionto machine, but an Iomed machine and pads and a SomaCorrect VED. I don't know if this really makes any difference, but what he advertises on his website is Physion, so I was surprised to receive Iomed. His instructions are to use the machine at 2 milli-amps for 20 minutes, but it also goes to 3 and 4. I'm going to call and ask why 2 is preferred and if I can do it every day instead of 2-4 times a week.
Tried it last night with the Dexamethosone and Verapamil. Can't say I noticed any effect at all, but of course, that was one time. We'll see. Pad seems awfully wet still after 20 minutes ... I wonder how much drug is actually getting into the penis.
I hope it will at the least stop inflammation and help me stabalize sooner.
Nemo
The volume of the fluid does not change during iontophoresis. Instead, the charged molecules of drug migrate through the fluid to and then into the skin. The current flows from one pad to the other, and carries the molecules of drug along. Thus, it only works for small charged molecules.
Tim
Regrettably the 2 Uro's I have seen here in Southern Ontario say their is no cure for this disease and surgery is the only option they've given me. My family physician is willing to fill perscriptions for me for whatever I would like to try(she is learning as I learn). I thought I would try Verapamil cream(I realize the revues are mixed) but I wish to try it. What is the recommended dosage or concentrate (per ? ml size tube) for the making of this cream? How many applications per day? Any known side affects?
I will pass this information to my doctor. Thank you.
Grant
I know of NO MIXED reviews on verapamil cream. We have one member out of dozens that report any success. The rest all regret the money spent.
I would click on this link and read it BEFORE considering topical Verapamil https://www.peyroniesforum.net/index.php/topic,328.0.html
Start at the bottom and read the first post and work your way up.
I would research Pentox/Arginine/Viagra.
I do not think there is an oral treatment that shows more promise. You doctor would have to prescribe the pentox and viagra.
Grant, I agree with Hawk on the fact that you'd likely waste a lot of money on topical verapamil. If you are going to spend that much money, I think Iontophoresis would be the better choice, as it has been proven to at least get the verapamil into the tunica where the damage is. No one's ever proven TV penetrates.
You can buy an iontophoresis machine and the two drugs needed for what you'd spend on TV for a year. I think it's at least based on better science. Along with the Pentox/Arginine/Viagra combo Hawk mentions, I think that would be aggressive treatment based on the best science has to offer right now. Just my opinion. That's what I'm doing though.
Good luck brother,
Nemo
I talked to Dr. Carroll today about some questions about the Iontophoresis (which I ordered from him).
I asked about doing it every day. He said the only problem was the electricity tends to irritate the skin at the point of contact after about three days, so they typically do it every other day or so. As I am alternating application sites trying to get on both sides of the area I'm concerened about (one day on top, one day on bottom), I think I'll keep doing it every day.
I asked why he switched from Physion to Iomed equipment, and he said his patients were having trouble with the Physion application "cups" so he switched to Iomed as the patches are much better.
I asked about how long the Dexamethosone might take to alleviate pain (or the mild, migrating soreness I've been experiencing), he thought about 10 applications if it's inflammation, but if it was a scar contracting causing pain, it could take longer until the scar got softer. I don't think that's my problem, I think I've got some inflammation that is causing the sensations I'm feeling. I would like to hear from you guys that tried Ionto as to your results with stoping the pain/inflamation.
I forgot to ask about 2mA vs 3 or 4. For now, I guess I'll leave it at 2mA, although I seem to recall the succesful studies were using 4mA of current. Anyone have any thoughts on this. Maybe I'll call the Doc back on that one.
I asked about running the Dex on a negative current, then running the Verapamil on a positive current in seperate applications. He said he does it just like the studies did it (both drugs together) and recommends adhering to that protocal since it met with success (I didn't mention it hasn't done much good for the guys here.)
Anyway, that's where I am. I've done 4 applications. Can't tell anything's changed. Still no bend or palpable plaque, but I do have a couple small indentions and that persistent migrating sensation when flaccid and it feels a little sensitive in spots when erect if handled firmly.
I'll update as the treatments progress.
Nemo
Nothing much to update, but I do notice (after 6 sessions) that my penis does seem to hang looser when flaccid, and feels somehow smoother. Perhaps this is reducing inflammation - unfortunately, it's not alleviating the weird sensations I have yet. At any rate, it does make me think the Verapamil and Dexamathosone are at least penetrating to some degree.
Nemo
I developed Peyronie's about six years ago with pain for a year and stabilized for the last five (still waiting for the reversal back to normal they talk about -NOT). By age 66, I ended up with a 43 to 45 degree upward bend with a slight dogleg to the right and an hourglass. This resulted in shortening and narrowing of the shaft. I tried vitamin E with no results and my Dr. said if I could have intercourse, I should do nothing. Last month my wife developed tendinitis of the hip from trying to accommodate me, complained of pain and said I must seek treatment.
I went to a urologist who took ultrasound and could detect no plaque. His only recommendation was a prosthetic inflatable device. He said that the Nesbit or gortex patches didn't work and lead to ED. I persuaded him to prescribe topical Verapamil. My pharmacy recommended PDLabs http://www.pdlabs.net/. When they contacted me they stated that without pain or identifiable plaque, I wouldn't see results for 90 days. I started self treatment on April 9th (rub on for 2 minutes, wait 5 min., rub in for 2 more, twice a day). After a week I noticed increased blood flow to the penis and my wife said that the hourglass was less detectable (similar results from next day after Viagra use, may be a side effect of TV, a damn good one).
I am closing in on a month of twice daily TV use and wife feels a difference, no pain, however she feels slight burning after, even when I wash my groin with soap and water. Sill have curve and using 25mg of Viagra - highly recommended for all bends - gives your confidence back). I have not had any burning or itching from TV usage. I will continue TV for at least the next two months.
I will keep you posted of further progress.
June 4, 2008
Developed soreness in the soft tissue below the head after almost 2 months of topical (red sore spots and white blister). Called PDL yesterday and the pharmacist recommended 1% Hydocortisone on the sore area and to keep the verapamil off the area. Also Aquaphor may be used after treatment to stop itching. Started using last night and so far so good. Continued full feeling in the penis all day - verapamil does act like a topical Viagra! The 30 day tube of verapamil is lasting a month and one half. Will continue usage for at least another two months.
July 25, 2008
Just completed my 90+ day treatment and called PDlabs and said that the curve was about the same, perhaps softer bend. The shaft and head is fuller, seems longer and much smoother. Three months ago I didn't even like to touch my own self! Sex life has improved and can hold morning erections with out Viagra - wow! The rep said that this was an indication that the collagen is reforming and he didn't expect much change in the curve in 90 days. He also said that a tube averages about 30 days, not half a month more, so I need to increase the dosage. I ordered 90 more days supply, so I will keep you posted.
April 10, 2009
Completed another 90 days in October. No change in curvature. PDlabs offer 2 for one but I declined. With the continued use of Viagra and a lubricant, I improved my sex life. As I had some initial improvement in the first 90 days in hourglass and texture, I would recommend a 90 day program. If your curve improves, continue longer.
Hey Guys, I'm brand spankin' new here and I think this site is great.
I have a question. I'm 24 and I have no idea if I have Peyronies Disease but I have a very annoying curve thats not only bothering me cosmetically but also during some activities like running or biking. I do not have any pain or problems with an erection and can preform fine during sexual intercourse. I was thinking about seeing a urologist and getting the injections. My curve is downward and to the left and during an erection it also curves slightly counter-clockwise on top of all that. Do you think the injections would work for me?
Polo3:
My advice to you is not to "play around" with the injections. It has caused too much damage to too many guys that reported such on this forum. I personally have had 12 of them and each injection caused more nodules and plaque to my penis.
So, do not hesitate any further, get busy and see a qualified uro soon. The longer you wait, the worse this condition could get.
Old Man
Polo 3: From your description, it sounds to me like your curve has always been there, if so it's probably congenitcal. If you have no pain, erection problems, or difficulty having sex, I would be inclined to come to terms with your equipment rather than attempt anything drastic, like injections, which could result in you looking fondly often your current situation from a far more troubling perspective.
If you really are troubled by this tho, and it's not just a cosmetic inconvenience, you could maybe attempt to research into changes in curves with people outside of the sphere of peyronie's. I have seen the odd forum posts (so certainly not scientific) elsewhere of slight straightening via VED and traction devices in those with natural curves, but I have also seen reports of natural curves becoming more pronounced during traction.
Nemo:
Any updates on your treatments?
http://www.tensproducts.com/ (http://www.tensproducts.com/)
I am thinking of buying a tens unit instead of the Iomed or Decadron. The tens is much cheaper. Any thoughts on the Tens units?
Not sure that TENS unit would work to send current properly to do iontophoresis.
Tim
My bend was 50 deg. to the left, just below the head, caused by severe bending during prolonged sex. There was a pain on the left side which turned into
the bend almost over night a couple of weeks later. 2 months passed before I
determined I may need a little help and I went to the Urologist. Basically, it's like everyone says, there has not been enough studies and everyone is somewhat
different. Dr. prescribed topical Verapamil and I have been applying it 3 times
daily now for 7 months (except for the 3 weeks I got off of it because the base
of the medicine was irritating my skin); switched to a Vanpen Base which is
more like lotion and that has worked fine. I have seen improvement every month
since January when I started to take pictures for comparison. I have been improving
about 5 deg. per month and now have a 30 deg. bend which I am not calling
a victory by any means, because any bend makes sex difficult. At $50 per month
t would definitely be worth several months of trying this med. before considering
any of the other methods that have been discussed in this forum. As most say, the
pain went away after about 3 months, but as expected with a bend there is
pain during sex on the side that is healthy. I am also taking Vitamin E, which I figured
can't hurt, but I believe the real damage repair is TV and prayer. I will keep
you guys posted on future improvement. God Bless you, I know your pain and
fustration. Surely someone out there has had a similar experience; from what I've
read on this forum, there are a couple who describe the same symptoms and have
damaged the penis in a similar way, but have not indicated any success in improving
the Peyronies Disease.
Dale - thanks for your valuable contribution. I think you're lucky to have experienced these improvements with topical Verapamil, as I know that many others have not been so fortunate.
"Surely someone out there has had a similar experience; from what I've
read on this forum, there are a couple who describe the same symptoms and have
damaged the penis in a similar way, but have not indicated any success in improving
the Peyronies Disease."
I would say that a not insignificant number of people have experienced improvements through use of the VED... a few through traction too (though i would say that no-one has come up with a traction routine and stuck to it for a year or more, in the same way that they have through VED use). One or two through pentox alone. A combination of the two probably holds most promise, but being too enthusiastic in treating peyronie's can cause its own problems. I can't really comment of the success of verapamil with any authority as I don't frequent this board.
In terms of those newly diagnosed who go on to show improvements, I would argue that it's not easy to distinguish between naturally occuring improvements and those as a result of treatments. However, some people here have had curved units for many years and only experienced improvements when undergoing a VED routine.. so to me that's pretty much proof that it really does work for some people.
The method in which you came to develop peyronie's - an injury during sex - is far from rare. Developing a bend overnight though, is something that I haven't heard of before. Did a slight bend develop overnight, which developed into a more pronounced one? I can understand how that could happen.
[quote author=newguy link=topic=26.msg14537#msg14537 date=
"The method in which you came to develop peyronie's - an injury during sex - is far from rare. Developing a bend overnight though, is something that I haven't heard of before. Did a slight bend develop overnight, which developed into a more pronounced one? I can understand how that could happen."
[/quote]
Hawk - "overnight" may have been slightly "figure of speech"; however, I have sex on a weekend with no apparant
bending (about 2 weeks after the damaging sex), slight pain on left side but no problems with intercourse and the next week when I got an errection I was startled by what I saw. I can't really say that I was
at maximum bend at that time, but I sure remember it looking like I could piss around the corner.
Does anyone know which Iopmed model Dr Carol is using now? Is the cost the same as the Physion (around $1300)? I was ready to order from him until I found this forum. Now I want to read the specs on these devices. If the 10's device produces the same 4.0 ma current I don't see what the difference would be.
I have 40 deg upward curve with wasting and I also tried topical verapamil with no success. It looks like electricity is the way to go.
I'm in my early 50's and was diagnosed over three years ago with Peyronies Disease. I have what I'd call (at least) moderate curvature when erect and (at least) moderate discomfort during sex...definitely a detriment to our sex lives but my wife and I have been dealing with it as best we can. (I say "moderate" because I don't really have anything to which to compare it and because we still are able to have at least somewhat pleasurable sex.)
I've been on TV from Peyronies Disease Labs for just under 18 months. For the first 15 months I was on the regular dose: .5ml of 15% TV twice a day. After telling them there was no change in the curvature or discomfort, they recommended I increase to 4x/day. (I've been lucky as my insurance has picked up most of the cost.)
Now, after 2 1/2 months on the 4x/day regimen I can still report no change. (If anything my discomfort may have actually gotten worse over the last few months.)
My instinct is of course to finally give up on this stuff but two factors are making me hesitate. First, my urologist, (who never exactly endorsed the TV...it was more a case of "you can give it a try"), told me a couple of weeks ago that he MAY be detecting a slight to moderate reduction in the plaque. And second, the stuff is basically free for me so the main downside is the annoyance of having to apply the stuff all the time and have it on my penis.
So I'm interested in opinions...anyone think I should keep going with the TV given the possible reduction in plaque? Has anyone heard of or experienced a case where nothing happens for as long as 15 months (or longer) and THEN start to improve? Or on the flip side, anyone think that the possible reduction in plaque is irrelevant and that 15 months of no change in curvature or discomfort is totally reason enough to stop using the TV?
(My urologist is basically saying "you might want to just finish your current supply and then give up", but he also says "you might want to keep going just for the heck of it". And I don't blame him at all for this ambivalence. I feel that he's an honorable man and that this really is an honest and understandable attitude given the lack of a proven treatment for this disease.)
Thanks in advance for your help.
DW:
There are only a few cases of TV use giving any good results that have been posted on the forum. I know of one individual that good success from repeated TV use. His story is posted somewhere on the posts way back in the topic, so look for it by doing a search with the search feature link in the upper right hand corner of the page above.
Since your doctor states that you may or may not have success with the TV and as long as you have been doing it, I would say that you need to give up on it and try something else. There are wide and varied "treatments/therapies" that have been tried by guys on this forum and most have posted their results herein. So, do some hard looking through the various threads/topics to see if there is anything that you would be interested in trying. Peyronies Disease therapy is much of a hit and miss proposition. You just have to find the right combination for you as no two cases of Peyronies Disease are alike and each responds, if any, in a different way.
As I said, read all you can on this forum and then develop a plan of your own and keep up whatever approach you try long enough to determine if it will work for you. We are all here to help in any way, so ask questions and someone will be able to help or at least steer you to a source for a good answer.
Good luck to you and keep the faith.
Old Man
Old Man,
Thanks for your info and words of encouragement. So are you saying that you believe the possible reduction in the size of my plaque is most likely irrelevant given that the discomfort and curvature are at least the same? (I have read a bunch of posts on these boards and will dig deeper, but so far I haven't found anything that specifically covers a question such as mine.)
DW:
Yes, the plaque/nodules can come and go at will it seems like in some cases. However, the underlying cause of the trauma or the trauma itself are still in the erectile tissue or tunica, etc.
In my case, my Peyronies Disease symptoms came and went several times in the over 50 years I have had this mess. In the inflammation stage, the nodules came on strong and as I treated the Peyronies Disease, some or in most cases the plaque and/or nodules disappeared. There seems to be no rule of thumb about Peyronies Disease and how it affects each individual. I firmly believe that every case is different than any other and has to be treated in different manners to achieve any good results. One just has to keep trying for some method of therapy that will work, whether it be oral, supplements, VED therapy or other means, etc.
So, a person just has to develop his own method of treatment/therapy. Mine just happened to be the VED and the exercise regimen.
Old Man
I,m newly diagnosed,,by my Prim. Care Phys.,,next week I see a Urologist,,,my Prim Care Doct,,,tells me he has 2 patients who are taking verapamil orally and the results are highly encouraging ...like I said I,m new ,,,but I dont see anything so far on this site reviewing verapamil oral,,,haven,t maybe looking right place an some one direct me or show me the way,,,anxiously waiting for advice ,,,Bobby Magee
Never heard of oral Verapamil being used to treat Peyronies Disease...only high blood pressure. I've taken Verapamil for years before developing Peyronies Disease, and it's now been 3 years since the Peyronies Disease started and I've been taking Verapamil pills all that time. As I see it (from my experience anyway), oral Verapamil didn't keep me from developing Peyronies Disease, and has had no effect on my Peyronies Disease since then.
Good Luck!
Steve
Thank you Steve,,I,m soooo frustrated at this time,,,I had the symptoms 3 mths ago,,,slight bend upward,,aft 3 mths,seems to have stopped,at about 30 degrees,just last month I went on line and but in "bent penis",,and found what was going on Thank God for sites like this, I went to Mass Gen Hosp. Bost,,,at urology I was told Nov. would be the earliest,for appt. Sheeeee told me that it was not an emergency!!!!!!!!!sso take it easy,,,I dont want to say here what I told her,,then proceeded to my Prim Care Phys, he gave me the verapamil story,,I will see his rec. urologist 9-4-08,,,I maybe miss interrpeted my Prim care,,,will share his prog. to you as soon as I see him.,,you people are the only line of communication I have today, so thanks a million, Bobby Magee
Actually Bobby, I would be interested to hear what you told the urology office. :D
I also doubt that oral verapamil is used for Peyronies Disease.
Is there a consensus on this forum on verapamil injections? Who has had injections and what do you see as the result?
I am unaware of any success/improvements posted. I believe Old Man believes injections caused him to develop more Peyronies nodes.
Dr Levine it appears injects verapamil in all the patients he has on Traction. His treatment appears a direct contrast to the experience of some on this forum.
I am tempted to try injections if a few here have had any positive experience. If not, I'm inclined to follow the collective wisdom here and avoid injections.
Ptolemy,
I do go to Levine, and I think he is a great doctor. He will only do a series of 6 injections and then evaluate progress at that point. He told me directly that 60% of his patients respond favorably to his combines therapy of 1. meds, 2. traction, and 3. injections.
I had 6 injections and they didn't do anything for me, and is why I eventually ended up having surgery. I agree that the feedback of those on this forum don't support the injections. But I believe Levine, and that the injections must work for some. When I go to my appointments with him, there are guys flying in from around the U.S. to get these. I had an 11am appointment one day and his nurse told me they had done about 20 so far that day alone. So clearly there are many guys getting these, and they all haven't found this forum yet. So I think we have to stay open minded and realize that some therapies work for some, and not for all. There is a lot of value in this site from both a knowledge and emotional support standpoint. If one therapy isn't working, then try something else. I personally couldn't sit still, I had to find something that worked for me. The surgery was eventually it. And you'll find many here who are also against the surgery. And I wouldn't recommend the surgery to everyone.
I also know that Levine is starting trials with Xiaflex, but we haven't seen the results yet and I'm not sure how you get in to be part of a trial.
Good luck with whatever you decide to do.
lwillisjr
Yes I am against injections into the penis but not what you are doing with Dr. Levine.
My problem with injections are the one for ED. That is PGE1 and trimix. There use can cause corporal fibrosis and make your condition worse. That is what happend to me.
Injections for a specific reasons by a qualified urologist should not cause a problem. IMHO
Stay away from injections for ED!!
Jackp
Quote from: Ptolemy on September 01, 2008, 07:31:59 AM
Is there a consensus on this forum on verapamil injections? Who has had injections and what do you see as the result?
Ptolemy, there certainly is not total agreement but we have survey results of those that have tried VI, both forum members and webvisitors. Here is the survey results.
http://www.peyroniessociety.org/survey_ilv2.htm
note the totaled numbers under the survey table
In short, 72% either reported no improvement or a worsening condition (either because of or or in spite of VI)
28% reported some improvement. It should also be noted that 80% 0f those reporting improvement reported only slight improvement.
It is important to understand that this is just an unscientiic survey and not a clinical study and has none of the controls of a controlled study.
Thanks for the feedback thus far. I really appreciate you personal experience. Hawk, thanks also for pointing me to the survey. I remember reading this now when I first started visiting this forum a year or so back. I had forgotten. I had re-checked the child boards but there is no reference to Verapamil.
Well I will be avoiding injections now. Even in Dr. Levine's use it would appear he's never done injections alone to prove their value.
Ptolemy,
Not true, and sorry for the confusion. I was simply referring to Levine's current therapy approach to someone with Peyronie's Disease. And he doesn't recommend this approach to all his patients. Each case is unique and may require a different therapeutic approach.
However, he did in fact do studies on VI injections alone in the 90's. I found a link to one of them here. http://www.medscape.com/medline/abstract/8189561?src=emed_ckb_ref_0 (http://www.medscape.com/medline/abstract/8189561?src=emed_ckb_ref_0)
I'm sure you can google other's as well.
Jackp... thanks on the clarification of ED injections vs. VI injections.
Les
To avoid cutting and pasting let me say this:
The patients saw significant improvement in plaque-associated penile narrowing (100%) and curvature (42%). However, objectively there was a decreased plaque volume of greater than 50% in 30% of the patients.
Plaque softening was noted in all patients. 83% noticed that plaque-related changes in erectile function had arrested or improved. There was no toxicity nor did symptoms recur when improvement was noted.
Interesting. Those results are amazing. Granted there were only 14 men back in 1994. Why hasn't it caught on and why is our personal experience inconsistent with this?
I am not sure I have seen this study but I did see one that Dr. Mulhall was associated with. I found the results of that study to be unsupportive of the conclusions that they drew from the data.
First, lets be clear. There is one factor by which Peyronies Disease improvement can legitimately be measured. It cannot be measured by a reduction in pain (since that is the natural progress of Peyronies Disease). It cannot be measured by reduction of plaque or softening of plaque for many reasons. The limiting factor of Peyronies Disease is deformity. That either gets better or the patient is not helped. You indicate 58% saw no improvement. Clearly some significant percentage of those saw some worsening. It is very likely that some percentage of those that did see improvement saw only slight subjective improvement.
PS: Some differences between ED injections and Verapamil injections are that with Verapamil injections there are multiple punctures at each session as opposed to one puncture with an ED injection. Another difference is that an ED injection uses almost the smallest gauge insulin needle made were VI uses a much larger gauge needle.
I also found the following article which compares SEVERAL Intralesional Verapamil studies. Several by Dr. Levine including one published in the year 2000 with 156 participants.
http://www.nature.com/ijir/journal/v14/n5/full/3900917a.html (http://www.nature.com/ijir/journal/v14/n5/full/3900917a.html)
And this one that may be the one Hawk referred too:
http://www.medscape.com/medline/abstract/17572211?src=emed_ckb_ref_0 (http://www.medscape.com/medline/abstract/17572211?src=emed_ckb_ref_0)
I'm not for or against VI Injections, I had a series of 6 and they did not help me. But clearly there are statistical facts here the it does help some men.
Hawk:
The doctor that gave me my 12 VI injections did not believe in using deadener when giving the shots so I only had the one puncture for each shot. Since I have a high threshold of pain, they did not bother me at all. However, each and every injection gave a nodule or a small plaque formation.
Hence I am categorically against any injection into my prized possession at any time. This applies only to me, so others can choose to whatever they desire about injections.
Old Man
I have a slight (15-20 degree) curvature to the left about halfway up the length of my penis. It's not that bad I guess, I'm still fully functional and pain is minimal, but it's impacting me psychologically. I took meds (pentox, vit E, Acetyl-L carnitine, etc.) for about a year with no noticeable changes so I thought I'd give the injections a try, only 2 though, 1 this Friday and 1 next Friday (well it's 2 visits, I don't know if there will be multiple injections per visit or not?) I know from reading that it has helped some here and not helped others. I was wondering if these shots will make my penis sore for a couple of days afterwards or has that not been an issue. I have a date the Saturday following the 1st injection is why I ask. Any input is appreciated.
ALDAR - your situation is similar to mine - it sounds very familiar - I am on all those meds but it seems they only numb the pain - I think people here may argue that these meds have been helpful in suppressing the disease and ensuring that it does not progress - so in that respect they have been helpful......
I would welcome other opinions on this matter....
I went thru a series of 6 verapamil injections spaced over a 12 week period. Definitely reduced the pain but had no effect on the curvature. The doctor did n0t use anything to numb my penis before teh injection so there was a bit of pain....OK enough pain to make me quite uncomfortable. I have come to believe that there are some places where a needle just should not go!!! I have a big curvature so am thinking of applying for a job as a nude model for sculptors who make fountains, no longer have to worry about peeing on my shoes but gotta make sure I don't shoot over the top of urinals.
OK maybe it's not so funny, my sex life sucks and the doctor is not sure what to do next.
crooked canuck - have you tried PENTOX or ALC??
These are oral medications that you should really be talking to your uro about - there is masses of information here on this forum about this..
My doc prescribed topical verapamil...he doubted it would work but did tell me that ANY injections would cause futher plaque..it is that simple...he even kinda chided that in the old days they actually would inject cortosine right into the plaque...he said adding much more inflamation and trauma to the area was kinda like trying to put a a fire by pouring gas on it and saying ..well it is a liquid and the liquid might put out the fire ... although his "cure" for this is surgery, he said that really was traumatic and inflamatory and not the best but actually the worst of all treatments but at teh endo of the line it is what is done as last resort... had nothing to be optomistic about it other thatn to tell me a very famous living ex. Pres. has this condition and it is more common than "just me"
worried:
Your doctor sounds like that he has had really good experience with Peyronies Disease patients. At least, he gave you the straight skinny about Peyronies Disease. Yes, surgery is the last resort for Peyronies Disease as he said and you should well remember his comments about it.
Verapamil injections have been tried by many of us without much success in helping with Peyronies Disease symptoms. Most of us suffered more plaque, nodules and inflammation as a result of the shots. There is a topic about verapamil treatments, so look it up and search through the posts to develop your own conclusion about using verapamil in any forum.
The living ex-president he told you about is Bill Clinton. One of my personal uros was a navy surgeon and was stationed at the Bethesda Naval Hospital. He was Pres. Clinton's urologist and he personally knows for a fact that the man has Peyronies Disease and in the worst form. Whether or not he has been able to get some relief from it, we don't know, but the man has tried many and varied treatments for it.
So, you can see that Peyronies Disease is no respecter of persons and just about anybody can have it. Again, as your doctor said, surgery is the last resort, so please look for other options before charging off to the knife.
Old Man
I suppose I should steer clear of this debate because it only adds to the confusion but I am one of the apparently few sufferers who has benefited from varapamil injections. I can't say why or how other than to report that over a 3 year period I have probably had 15 or so shots and they have definitely shrunk the plaque & I have yet to have any nodules or other negative side affects. My curvature remains around 90 degrees but the mass has clearly reduced and is softer. Obviously my uro is a believer although he is realistic in cautioning that I have a ways to go - and may never anything close to "normal" again. I have followed a fairly strict discipline as advised by Old Man with the VED & I think it is helping. Otherwise, I continue to take mixed tocopheral vit. E . At this point I am as bewildered to understand this crazy affliction as anybody but I feel that it would be a disservice to others if I didn't offer a contrary opinion. Am I the only one?
voulezvous, Thanks for being brave enough to jump in and share this! I think it is really important for ALL the relevant information to get shared. Personally, I would not recommend any type of injections to anyone with Peyronie's, however, I am EXTREMELY happy that it is obviously working out for you. It would be nice to see some sort of research trial demonstrating it to be safe for a broad range of guys though. Again, things for sharing, that information needs to be part of the record so others can be more informed as they weigh their options. - George
voulezvous,
There is no reason to sit out a discussion. I am curious however that you count no improvement in bend as improvement. I am happy for your sense of progress but mot men cound improvement as a reduction in curve or deformity. pain goes away on its own. Plaque is mostly a concern only because it causes curve. Erections can be influenced by so many factors.
Curve and curve and size (deformity) are the determining factor in improvement in my opinion.
Thanks for the encouragement. I meant to also include in my post (& will now) my total agreement with the exercise of caution with regard to any injections. In no way do I doubt that others have had very negative results from shots. Hopefully, any ethical uro will detect swelling or nodules or worsening conditions before continuing shots but I firmly believe that we are the best judges of what what's going on in our "joints" & bear the responsibility. I suspect that, like me, most of us are familiar by feel with every centimeter & check daily for changes. I'm also sure that some days I imagine progress & other days I imagine reversal. My evidence of shrinkage is supported by Doppler readings.
As to the bend situation, I have asked my uro the same question & his response has been that a small amount of plaque can cause a bend as much as a large lump. To me this makes sense as I think of anything being "held down". It doesn't matter if its a 2 inch rope or a thread. If its still attached by anything, its still attached. The bend will be there until the plaque has totally dissipated.
While we are on this issue I would like to make it emphatically clear that I believe *PAIN* to be a *BAD* thing. I believe the *ABSENCE* of pain to be a *GOOD* thing. Additionally, I believe *LARGE* plaques to be a *BAD* thing and the *ABSENCE* of large plaques to be a *GOOD* thing. Of course we would all like the deformities to go away as well, but the more pain and the more large plaques, the more the likelihood of ADDITIONAL deformities. There is also the widely propagated myth that Peyronie's goes through "stages" and the pain comes and then goes and thats that. The problem is that in real life it doesn't work out that way. That pain can come back at any time and, with it, new and larger plaques and before you know it, the deformity you had is nothing compared to what you have now. So, the biggest benefit of the stuff we now have available is the fact that it keeps things from getting worse. And thats about the best you can do most of the time. One might argue that the VED can resolve the deformity. And while that is true in the short term, in the longer term as soon as you stop using the VED, the deformity will reassert itself. I am not saying this to knock the VED, rather my point is the opposite. Getting rid of the deformity has value EVEN IF it is temporary AND stopping the progress of Peyronie's with anything, even TV or VED, has significant value, is a benefit in and of itself, and shouldn't be knocked. - George
Has anyone had any success with topical verapamil? My uro told me I do not have Peyronies Disease but congenital curvature but still gave me a prescription for TV from Peyronies Disease LABS. What's the cost like for these things and is there any point if i don't have Peyronies Disease? (I've noticed uro's always diagnose me with congenital, but add in "you can try vit E" or other things like that related to Peyronies Disease).
Wayne999,I didn't have any luck with it.After I complained to them,they doubled the dose at no additional charge but I spent almost $2 Grand! Without any improvement.My opinion is that is does not work!
Note to all:
If I were you guys, I would think twice before using TV for congenital curvature. I see no possible way that it change that curve in any manner. Others can prove me wrong and post examples of that occurring. The cost of this medication is very high and with little possible results would not be cost effective IMHO.
I know of very few, if any, that have had any success with TV for Peyronies Disease. Some have had success with the injections though.
Old Man
Topical Verapamil is hypothesized to act by an effect on abnormal collagen. I see no reason it should work on normal tissue that is slightly different in tension/length for other reasons (ie you were just born with a slight asymmetry).
Tim
wayne999, unless your insurance company will cover it, that's going to be a mighty expensive placebo. TV is claimed to increase the natural production of collagenase, which in turn is supposed to attack Peyronie's collagen. I have no idea why it would be prescribed for a congenital curvature. You'll have no trouble finding posters - like myself - who spent over $2K on that stuff on the recommendation of a urologist and saw absolutely no effect on Peyronie's disease.
Can really say whether or not it was the TV, but I last posted a 30deg bend back in May.
I stopped the TV a couple of months back mainly because I was just tired of applying it, but
regardless, I am now 15deg which is tolerable. A huge difference than 50deg I was a year ago.
There is hope in some cases.
I've had 5 injections of Verapamil (every 2 weeks), and have noticed no change in curvature yet. The only thing I have noticed is a greater sensitivity on the tip of my penis-very similar to when then disease started to take full effect. Has anyone else had the same experience? I told my uro, he said that it means the injections are starting to work, but I honestly don't believe that to be true.
Grant,
I had 6 Verapamil injections. I took pictures (actually my wife did) before and during the treatments to track and monitor any progress. After 6 injections my uro and I agreed that there was no improvment. If there had been any improvment, he would have proceeded with another series of 6 injections. But since it wasn't working, then we pursued another form of treatment. The VI's didn't work for me.
Doesn't sound promising to me, Grant.
Tim
I dont know if I've posted on this topic before or not.
But .... I successfully used TV treatments a few years ago. Reduced my curvature from 45 degrees to about 15 degrees and it has not changed since. I went to Dr. Fitch, the doctor who did the original TV tests. I haven't seen him since finishing my treatment 2-3 years ago.
is TV available only in the states???
Can anyone tell me the cost of Topical Verapamil? The Web site doesn't mention the cost. I don't have insurance and I'm considering asking a doctor to prescribe it for me, after I read up on it a bit more.
Maybe a doctor will be more willing to prescribe it than they are in prescribing Pentox.
bodoo2u:
You should go back and read all the posts under the verapamil topic about its pros and cons. There is very little evidence that it helps for the majority of users. Some have had good luck with its use though. There are a few posts that list the success some guys had, so be sure to read those and maybe give the users a PM to get their background on how it worked for them.
It is quite an expensive medication and usually requires a long term usage as I understand it. So, maybe some who have used it can come forward and give you an idea of what the cost may be.
Old Man
boodoo2u:
I tried TV for about 6 months with absolutely no results.
As to the price...I found a local 'compounding pharmacy' who would prepare the TV themselves rather than order from PDL. It was MUCH less expensive, and covered by my insurance for a $20 co-pay.
The caveats being that it probably wasn't the exact formulation that PDL makes so perhaps that's why it had no effect (although personally, I doubt that) and the other being that PDL has a patent on TV, so if I told you my pharmacy, they could probably get into a lot of trouble!
Like OldMan said, read all the posts on TV (and the survey that was done on the injections too) so you can draw your own conclusions about TV's effectiveness...no one here can (or will) tell you that it absolutely does or does not work.
Steve
Gentlemen, have been using topical Verapamil for 1.5 months now- very expensive and all that. Does anyone have any particular feeling about applying heat after its use. I have been using a hot water bottle every night for 15 to 30 min before bed. It gets hot, then a little "stingy" at which point I remove, let cool and then reapply... I have had what old man describes as a mild case of Peyronies Disease for 2.5 months.
Best,
G
???
Wow,
How frustrating. I was diagnosed with peyronies this past month (have had it for 6 months) and my doctor pretty much told me I would most likely just have to live with it. My curviture is slight and defect is primarily more of an indention that anything causing painful erections. He presribed the PDLabs Topical Verapamil which cost around $700.00 for a 3 months Rx. They informed me treatment typically would last for about 1 year. Most of the posts I have found are not leaving me with a lot of optimism concerning this product. I happened on this website and forum doing some research tonight am overwhelmed with all the comments and information. I hope to find and report success with something someday.
8 months - insurance paid nothing - absolutely no effect. I threw the last tube away.
There's nothing left to say about TV or PDL that hasn't been said many times over. What's going on is pretty obvious.
Study finding no statistically significant improvement with intralesional verapamil treatment. (only the abstract unfortunately)
http://www.springerlink.com/content/m4363161q075326p/
McNally
PS I hope this is the correct procedure to post this type of information.
J and I did a report on PDL labs, I don't know where hawk has put it but a hyperlink to it might be helpful for newer people. Whatever happened to PDL labs?
"Uncontrolled studies have suggested that up to 60% of patients can be helped with verapamil injections. "
This was in the paper to the canadian medical society in the link posted by hawk regarding Dr. Levine and verapamil injections. Where are all these studies? Based on our PDS survey the success rate from verapamil injections was VERY low. I just simply don't believe this statistic.
Comebackid
I think Tim has cautioned us all before about interpretting data from surveys on this forum. It is uncontrolled. What I mean is that maybe the ones that the VI helped didn't come back for some reason. There are some success stories on this forum but you would think there would be more. So I would be cautious about basing opinions on surveys. I would think there would be more positive responses to support the medical findings. But I have to believe the medical studies are done in a much more controlled way.
Guys,
I'm seriously considering VI. My doc, unlike Levine, promises to use a small needle that should not cause bruising and/or trauma. I'm thinking of doing them every other week, to let the area heal between each injection. I also think that wearing FastSize between injections could allow the drug to work itself in better.
Anyone else considering the same?
My husband had his first VI last week. He is being treated by Dr. Morgenthaler in Boston. Dr. M reportedly told hubby he would be publishing a new study soon that demonstrates the injections work but not the topical application. Hubby had tried the cream as recommended by another urologist for 2 months. My husband had done some research and found Dr. M. After one visit with him (so much more thorough than other urologists) he decided to follow his advise. Dr. M also discovered my husband has low testosterone and that is being worked up as well for potential treatment.
In terms of the injection, he said "it wasn't bad" - had a shot of novacaine first. The needle was small but was used in several places. He was tender that day but resumed sexual relations two days later (so it couldn't hurt that much!). His shots are scheduled every 3 weeks. I hope it offers improvement for him. I'll keep you posted on his progress.
wheat16,
Thanks and keep us updated. Several studies have been published indicating some success with the verapamil injections. We just can't seem to find anyone personally who has a positive experience to share. I had a series of 6 injections and didn't have any problems, but also did not see any improvement. My experience was the same as far as the pain during the injections themselves was tolerable, some bruising later in the day. And pretty much back to "normal" a day or so later.
I am considering VI. Appointment on Thursday for the first shot.
My doc will use a thin needle. I asked Dr. Levine about the risks of VI making things worse and he said that he injected over 1,000 men with a 25 gauge needle, and only 6% got worse. He also told me that during the treatment, the plaque will seem as if it is becoming larger - he said not to worry about that.
Finally, he strongly suggested using traction while being treated with VI.
I'm still worried about the 6% given the negative feedback on this forum, but I think I will go for it.
Believer,
I'm a patient of Levines. And he did my injections. Yes the plaque did seem like it got larger at first but then would reduce back down. As with ANYTHING there is a risk. But if you take absolutely no risk, then you will sit around and do nothing, and still have Peyronies Disease 20 years from now. The 6% is a risk, and of the other 94% we don't know how many actually benefited from the injections. And evidently few if any of them are on this forum. The injections did not help me, but did NOT do any additional damage.
Les, thanks for the input.
Well guys, wish me luck. I took the plunge and had my first Verapamil injection today. To some it's old news, but for me, Verapamil is the "Obama" of Peyronies Disease treatments at the moment.
One down, five to go.
The doctor used a very thin needle and no anesthesia. Overall, the pain was truly minimal, but it was still a displeasing experience. Though to be very honest, if I knew for 100% that these injections will cure Peyronie's, the pain associated with the injection was comparable to eating vanilla ice cream in an amusement park on a hot summer day. It's really the fear of "doom" that makes Verapamil injections displeasing.
For those interested in details, I felt sharp pain for 1-2 seconds when the needle pierced the hard plaque. Then the needle was moved out and pushed back in again. That's when I again felt the sharp pain for 1-2 seconds. The whole injection took 1.5 minutes at the most.
It's been about 3 hours now, and so far, thankfully, I see no reason to be alarmed.
I plan to use the FastSize actively, in addition to Pentox and L-Arginine which I've already used for nearly a year.
I had Peyronies Disease for 3.5 years, 45 degree bend with a twist at the present time. Minimal calcification.
I pray for the chance to deliver you good news as I move forward.
Believer
Believer,
That is Levine's suggested treatment.... Verapamil, traction, and Pentox. It is th combination that he says more than 50% of his patients respond favorably too. I hope it works for you.
It's was last May when I posted a reply on the site and at that time I said I would keep everyone informed on the progress. Based on actual photos, I started with a 50deg bend and with 7 months of TV, vitamen E and one month supply of herbal treatment of PyroTab (I was desperate but not stupid enough to order 2 or more months) improved to 30deg.
I continued the TV for a couple of more months till I was 20deg and even without the medication, I am now at 10deg which is only a slight curvature to the left; I believe that was normal before the injury and really don't anticipate any additional correction. Based on what I am reading on this site, I believe the medication might have helped speed up the healing process, but either the body will heal itself or it won't. The good news is that the elastic membrane which is damaged by scar tissue can return to normal in some people, science needs to find a way to make that possible in all people. Big problem and very little action by the medical profession.
Dale - It's very heartening not only that you showed such a dramatic improvement, but also that you took the time to come back and tell us about it. Maybe this should be moved, or duplicated in the 'improvements' thread.
I suspect that launching into a regime early on was of some help to you, but like you say it probably has as much to do with your individual chemistry. I'll be glad when we one day have a greater understanding of the processes at work, and how to achieve these kinds of improvements across the board.
Dale,
Congrats on your improvement! We've had very few if anyone see any results from TV, J and I wrote a report on the medication, its under the main topics section. We had so many people who saw no results , many questioned whether the verapamil was even delivered deep enough to work...
Comebackid
If someone could please help me who has experienced Verapamil Injections it would be greatly appreciated. I injured my penis 4wks ago resulting in a plaque at the tip of my penis. Today, at the doctor, he said he if he were I, he would go ahead with verapamil injections to possibly avoid any future complications from the plaque (scar tissue) hardening. He said bruising would occur from the injections and that there would be swelling from the injection of lidocaine.
Well, Im freaking out right now. There is black and blue ugly bruising on the top of my penis and it is really swollen at the tip(site of injections). In addition there is bruising along the upper half, right side of my shaft. I have a large vein on the top of my penis. Is the doctor supposed to avoid veins on the injection or inject into the vein? will this bruising ever go away? what about the swelling? thanks in advance, I appreciate any help. I am only 22.
YoungOne09,
I have not had Verapamil injections, but many others have; some with, some without success. I've read the posts and it sounds to me like swelling/bruising is NOT an unusual result from injections to the penis.
Search the forum, maybe with the term "injections." Several forum members are participating in a test for a promising new drug that is administered via injections. Some have experienced bruising and swelling.
Also, you might contact the physician's office and inquire about your concern.
CF
This is a response to youngone 09. I have had both Verapamil injections and am in the Xiaflex study. Bruising is very common from penile injections, swelling less so, but not unusual. Considerable soreness also occurs often. You should experience considerable improvement in all symptoms within 3-6 days based on my experience.
If these symptoms are all you have to experience, but result in plaque and curvature reduction, consider yourself very fortunate. Good luck!
YoungOne,
I also have had the injections. I'm in total agreement with the prior posts. You can relax. What you are experiencing is natural. Call the doctors office for confirmation if it helps ease your questions. I had 6 Verapamil injections. After the first one I learned to take an ice pack with me each time for the subsequent injections. After each injection I went home and sat on ice. I still had bruising for several days following each one.
I believe the doc avoids arteries and veins. They want the Verapamil to stay at the site so it has a chance to work. putting it in an artery would cause it to be carried away too soon. The injections can be pretty rough. I had more pain with the 2 lidocaine injections that preceded each Verapamil injection. Once the lidocaine kicked in then I felt little pain after that. But the Verapamil is usually done with a larger gauge needle and somewhat invasive, therefore all the bruising.
Thanks for the help guys. I ended up having a panic attack from the black and blue swelling and numbness the night of the injections. But, the numbness and swelling is gone and now its just the bruising. I figure it will get better over time. I am debating whether to go through with my next two treatments, the bruising is almost more troublesome for me than the actual problem. I guess I will decide when I go back in two weeks. I may opt for the verpamil injection with no lidocaine. It was the most painful thing I have ever experienced (the injections were right below the head, where there are the most nerves). But, the doctor seems intelligent and optimistic that It may help, given that my injury only happened a month ago. I will keep you posted.
Given my circumstances: 23 years old, tramua induced scar tissue nodule below head of penis that happened 4wks ago, should i continue with verapamil shots? the reason I went ahead and got the first shots was the doctor said he would do it if he was in my position to avoid possible future complications. the thing is, I dont really have a bad bend (other than my natural curve to the left that ive had forever). the scary issue for me was painful erections and the hinge like feeling at the tip. Im thinking maybe I should just take lots of vitamins and continue to seek his advice as he is young and very smart. but, like i stated earlier, i do not know if i can deal with the gnarly bruising at this stage of my life.
Whether you continue with the injections is up to you. You will get mixed opinions from people here. But make your decision based on input form your doctor and what you are trying to achieve long term.
Don't make the decision based on the bruising. And the bruising is likely caused by the Verapmil site, and not so much the lidocaine. The VI injection is more invasive. If you continue with the injections, get the lidocaine. If not, they will need to strap you down on the table. And about halfway into the VI you will wonder why in the world you didn't get the lidocaine first. That is if you haven't passed out from the pain first ;D ;D ;D
Hi :)
It has been a while since the last time I posted https://www.peyroniesforum.net/index.php/topic,27.0.html,
Then, I promised I would let the people know about the efficiency of the verapamil, but did not, sorry about it... (on my behalf I was also waiting to have a little to say about it... as a matter of fact now I do...)
So far I have had about 7 injections of verapamil/isoptine (approx.once a month, each time in a different plaque) here (France) Verapamil goes by 5 mg/2ml per phial, so it's approx. 3 phial per injection (15mg/6ml)...
It does have an effect on me, each time it has softened the plaques though it did not make them deasappear totally ( they don't seem like nodosities anymore they feel more flat and more soft)... It has improved my erections since most of the deformations of my penis reduced (I don't have a real bend so far)... So I am pretty happy with the treatment though I am not has hard as I use to (I mean even after I realized I was suffering from La Peyronie's disease ...)
My Doctor recently prescribed me some Levitra 10mg. I tried it once but did not notice much difference, I shoud do it again see if it improves the recovering of the cavernous tissues...
Conclusion:I do think that in my case the verapamil option is functional, according to the discussion I had with the Dr and to statistics it depends on each case, I don't know how long I am going to have to keep on doing it , I guess until the plaques and the disease totaly vanish and we know that may never happen or stop and start again...
I will let you know what's going on, good luck to you all
Regards,
atchoum
Got my second round of verapamil injections at the uro today. this time without lidocaine. it was painful, but i actually do not remember it being as bad as the first time. I actually have no bruising so far which is cool. last time the bruising was crazy. maybe he was extra careful, hopefully he didnt just do a half a** job so that i would keep coming back. He only injected 4.5ml, i hope that is enough, into my large plaque on top.
YoungOne - Ibuprofen would probably be useful too at this time. Not sure that I'd recommend anything else until the course of injections are finished (how many injections do you intend on having). Here's hoping that they help!!
New Guy- I tend to lay off the arginine for a few days because i dont want to increase the circulation. I want the verapamil to stay on site. I was also thinking about laying of ibuprofen for a while for the same reason (its a blood thinner). Basically, think i may stick to vit. e and fish oil for a few days, and then start back up with my multi v, L-arginine, vitamin e cocktail. But this is all just my voodoo treatment. any recommendations welcome. Given my injury only occurred 6wks ago, im optimistic something may help limit the damage i caused and prevent further worsening. My only problems are painful erections, and a lump in the upper third of my penis when flaccid.
I am not sure if this is the same but I am on my 10th interferon shot and I see minor improvement in pain. Th Dr says the blood flow is better and curve decreased but I don't feel better. And boy I am having a tough time dealing with this
First I have heard of interferon being used for Peyronies treatment.
Anyone else heard of this?
I am a 43-year old man who was diagnosed with Peyronie's in December, 2008, when a small nodule appeared at the base of my penis. On the advice of several urologists, I did nothing, apart from a course of acupuncture, for a period of three months, during which time I saw gradual increase in plaque distribution.
After about three months, when a significant plaque formation appeared (which also coincided with a dent in my penis when erect), I found a second urologist who administered a course of 6 Verapamil injections over a period of 12 weeks. On the advice of the injecting urologist, during the course of the injections I maintained as much erection activity as seemed normal. At the end of 12 weeks the second urologist concluded that the injections had not been effective and advised that I suspend treatment, which I did.
Two weeks after ending the injection treatment, and seven months after the first appearance of symptoms, I started to see an osteopath who believes that the Peyronie's symptoms are caused by inflammation originating in a disk injury in my sacro-iliac joint. He believes that the immume system overreaction which has caused the plaque buildup will cease if the tissue is not irritated through having erections. He has asked that I refrain from having erections for a period of 3 months of osteopathic treatment to the extent possible.
While I'm concerned about pursuing increasingly "kooky" courses of treatment in reaction to the failure of the injections, I'm willing to pursue the course of exercises and adjustments provided by the osteopath on the "can't hurt" theory of alternative treatments. However,, I'm concerned about the impact of avoiding erections for this 3-month period.
Because erections produce soreness for me, I'm open to pursuing this course, but, conventional wisdom (including most opinions in these posts) hold that the more erections, the better. I'm afraid that the osteopath's belief that erections alone cause the minute tissue damage that creates the immune overreaction and the fibroblast-plaque cycle is wrong, and that avoiding erections will result in further calcification and something called "penile shrinkage" (which I don't know what is, but, it sounds scary!)
So:
1. Does anyone have any specific experience with avoiding erections during the developmental stage of Peyronie's? Is this time critical to avoiding penile shrinkage, or, are there not likely to be serious consequences from a set period of this length?
2. If I do engage in erections, does anyone have suggestions for avoiding consequential pain, other than Advil? I've found Advil to be moderately helpful when I have soreness when flaccid, which is fairly often, although I've also found deep breathing to be helpful.
3. Are there any studies relating stress to Peyronie's incidence and resolution? The osteopath is also adamant that relaxation and less stress (be it in the form of hot baths or salubrious emotional environments) is key to preventing Peyronie's and creating a turnaround. So, I'm curious about factors like habitation, environment, work, etc.
Thanks for any thoughts and help. I recently discovered the forum and really appreciate the opportunity to hear others' experiences and try to find the right way forward.
Erections Versus No ErectionsQuote1. Does anyone have any specific experience with avoiding erections during the developmental stage of Peyronie's? Is this time critical to avoiding penile shrinkage, or, are there not likely to be serious consequences from a set period of this length?
To FWilly:
There seems to be a wide divergence of opinion on this but I think it
comes down to the type of injury you have. Mine was from a significant internal tear and every erection I had caused more damage of tissues which were trying to heal. I chose to try to suppress erections with several herbal products; Chaste Tree Berry tincture and Licorice tincture, both of which are reputed to decrease libido. I also took some Valium for a few weeks to help sleep through the night. There are other natural sleep remedies such as Melatonin but I found this increased my dream activity and was working against my attempts to keep from getting aroused. For pain I mostly took natural pain reliever products containing corydalis (don't know if it's OK to mention brand names on this forum.) You can contact me for more info if you want it.
The downside of not having erections is decreased blood flow to the injured tissues and this is where the pro-erection folks have a good point to make. A low oxygen environment is more apt to produce more scarring in my opinion. This is one way in which a pharmaceutical product like pentoxafilline (Trental) can help. By decreasing the viscosity of blood it enables more blood with higher oxygen carrying capacity to circulate through the injured areas. It can perhaps accomplish the same thing as erections without the damaging side effects for the subset of people who need to be concerned about this.
Pentox itself may have some side effects, especially for people who have trouble with theophylline type drugs so check this out with your doctor. I resisted taking it for a few months because of this reaction but find that it seems to cause much less of a problem than I thought it would. I did have increased scarring and shrinkage during the last couple of months before beginning Pentox so can't really say that what I've done is the right way to go. I'm only offering some options for consideration. There's a lot of trial and error in all of this. Hunter
I've read that interferon has been used - mostly referenced in abstracts and studies of other drugs, which have occasionally listed interferon with verapamil as drugs that have been reported to help, but not proven to help in full studies.
Your osteopathic physician is speaking through his hat. That is utter nonsense that is not supported by one shred of experimental evidence, nor is it supported by the experience of men here (or elsewhere).
For some of us (but not most), erections can induce pain that seems terrible, and it is reasonable to try to avoid pain like that (assuming that pain is a signal that something is wrong). But on a simplistic level (and perhaps theoretical level), scarification requires gradual contraction of scar tissue, and stretching that out may help prevent it. It is the experience that stretching out using the VED, traction, or erections, can prevent worsening, and may reverse the contractile properties of these lesions. Additionally, the infusion of blood with an erection may also help.
So for most of us, the main issue is what to do about stretching out the tissue when it is most actively inflamed ("active" state) versus when it is quiescent and non-active. It seems easy to go ahead with a stretching program when things are quiet - more worrisome when they are inflamed.
In some diseases where erectile quality suffers in either quality or quantity (ie diabetes, or post-operative for prostate cancer resection using TURP), Peyronie's is more common. All of these suggest that regular stretching of the tunica should prevent the advancement of Peyronie's Disease and that avoiding erections may enhance progression.
One last note: it is important to avoid trauma during intercourse during this time, IMO. A weak erection due to any cause combined with vigorous sex is a potentially damaging combination of factors that could make things worse. You could perhaps discuss this with the Osteopath, though his willingness to theorize at the potential expense of your erectile function would send me running the other direction. Or you could try to see Dr. Lue or a comparable urologist and get going with traction/VED and Pentox.
Tim
Hello All,
I'm a newbie and glad to be here. I'm encouraged by all the aggressive approaches I've been reading about in your posts. I haven't read them all, but I've read a lot, including the report on TV, which is of primary relevance to me. I was diagnosed by my urologist in late June 2009. My Peyronies first appeared about 18 months earlier. He explained there is nothing guaranteed and suggested I start by trying TV and gave me a pamphlet from PDLabs, but recommended I buy from Wedgewood Pharmacy. Having absolutely no knowledge of Peyronies prior to waking into that office, I did what I could and paid a lot of money for three months of TV. Wedgewood says you aply it twice dailey and take calcium and zinc supplements (for what I have no idea) for 9 to 12 months. I've been using it faithfully for almost 30 days now. I'm wondering what the hell I'm doing. I don't see any improvement and the pain while erect had nearly subsided prior to beginning use. A dull throb is now present all the time at the site of the plaque. Having read a lot of posts in the last two days, I've learned that there are dormant periods and active periods. Is this renewed pain a sign of activation? Is the plaque increasing when I can feel the pressure/throb when flacid? Is it the TV working? This is all so new to me and I'm hoping someone with more knowledge and experience can share with me. Also, how is Wedgewood connected to the players I read about in the TV report posted by The Comeback Kid, if it is at all? My urologist wants to see me again in 3 months to see how the TV is doing.
Bobby
I just started my second month of TV, twice a day, etc. Got mine through Wedgewood Pharmacy. I notice no difference after the first 30 days. In fact, I think my ED is getting worse: I can obtain an erection, but not sustain it; and it's never really a good solid erection even with Cialis. I thought I saw an improvement at some point but it was just wishful thinking and being hopeful. I'm going to finish the 90 days worth (about $700.00 worth) and evaluate then. If I see even the slightest sign of improvement, I know I'll spend the money for more. What else can I do? I have not tried VED yet, but I see so many on here advocating for it. Is it the way to go?
jimifan
IMHO the VED is the best option. Do not try the PGE1 or Trimix shots for ED they make corporal fibrosis worse. Read my story in Our Histories. Even if you finally have to have surgery the VED will help keep your penis healthy.
Jackp
Newbie here. Thank you for this forum - it has been a godsend.
I was diagnosed with Peyronies around the first of the year. Fortunately, I had sought help from my urologist. He suggested the Verapamil injections (biweekly) and Vitamin E (oral).
My peyronies resulted in an "S" shaped erection. It was horribly painful. By the third injection, the pain had pretty much disappeared. After 13 injections, I now have about 90% improvement - i.e. I have an almost straight erection and absolutely no pain. The situation is seemingly improving even three weeks after my last injection. Has my erection returned to normal? No. It is noticeably smaller (at least to me), and I can feel the knobby hardness of the plaque. But - I am able to enjoy sex again.
Quote from: vhguy on September 27, 2009, 04:21:37 PM
Newbie here. Thank you for this forum - it has been a godsend.
After 13 injections, I now have about 90% improvement
vhguy,
Thank you for posting! You are one of the few that have stated that the VI's helped. But any improvement story is a good one.
Les
I have reattached the study on topical verapamil done in Texas that showed promising results.
Whilst very few on this board have posted any positive results an equal number have posted negative. This forum itself is not conclusive.
The question I have is are we questioning the integrity of the doctors that performed the study? They are based in Texas with Peyronies Disease labs so were they paid to prepare a false study?
Levine and Co, knock TV as they refer to a study done on patients that had tunica removed and tested where patients 24 hours prior to the operation applied TV. Could it be that the study was floored in one of 2 ways? It was not the same transdermal product used in the Texas study or not enough time was allowed to build up concentration as is also claimed by Peyronies Disease Labs? What is rarely mentioned is that Verapamil was found in the urine of patients, so was this contamination external or did TV penetrate into the urethra, and if that far why not into the tunica given time?
As there has been no follow up by either Peyronies Disease Labs or the medical community since, it is accepted in the respected circles that this is a waste of time based on one study.
The reason I raise this is that I want to add this to my traction and want to be sure I am not wasting my time and money, but there are unanswered questions. Other transdermal gels work so why not TV? Testim by auxilium for instance delivering testerone
What I am not asking here is whether verapamil itself works on plaque but whether the transdermal application method works.
Help me out here. Thoughts?
You pose some interesting questions. As research into peyronie's disease is very limited, I do believe that it's possible for commercial interests to manipulate the market somewhat. The support for the VED from some prominent urologists has diminshed without good reason. Of course this study may be an example of one that shouldn't be taken at face value, so who knows? I personally have no view of topical verapmail, but am interestsed to see what others think.
UK,
First I'd tell you to read the report done by J and I. I used both the "special" kind of TV and regular pharmacy made TV, neither worked. Based on my information I was told a different story everytime I called to Texas. Doctors could have easily been paid off, we simply don't know. We do know t here was a lawsuit, and some "shadey," activity, seems like a shadey group to begin with.
I would say that there is correlation that both verapamil injections and topical verapamil both show poor results, leads me to believe verapamil doesnt work at all...
The second question I'd ask is did the "patented delivery syste" ever get complete FDA approval, and if so why not? See my quote from the report:
FDA Trials
When I first spoke to Dallas Dryden in April after first purchasing the product he told me PDLabs was involved in phase 2 trials for FDA approval. After speaking to Brad on the phone just a few weeks ago he informed me that PDLabs is still trying to raise the $20 million dollars needed to begin phase 2 FDA trials. There is definitely some conflict here with their stories.
The NIH maintains a website, www.clinicaltrials.gov to provide the public with information about clinical trials for FDA approval. Section 113 of the FDA Modernization Act requires companies to submit information to clinicaltrials.gov for trials involving serious or life-threatening conditions. A study can be exempted from this requirement if making it public would discourage patients from enrolling, which could be the case for peyronies disease. Studies also must be registered with clinicaltrials.gov in order to be accepted for publication in medical journals. There is no evidence, either on the NIH site or in a journal, that such a study was carried out or is in progress. Is PDLabs really doing FDA trials? No one can seem to find this information, it is left unknown.
You may want to look this up and see if they have moved along, surely they would with such a great product?
As someone else pointed out there website hasn't been updated in years...
From the tons of people I talked to for my report I can remember only 1 that claimed TV helped him and for some reason he himself seemed very "questionable." We did a poll on TV, I don't see it under member polls, you might PM hawk and ask him where it is and if he could place it for all to view, the results were poor at best. I think TV is something that was hot for awhile, but hasn't really been talked about for years cause so many people said it didn't work.
I welcome any member who used it and saw results to post right here on this thread...
Comebackid
New guy here, been suffering from this disease for the past 6 months now. It started off with a really bad hourglass shape & constant pain. Went to the er at first & they misdiagnosed it as a contusion & gave me Ibuprofen. Finally got a urologist appointment 2 months ago & found out it was Peyronie's. All they told me was to take a bunch of vitamin E & come come back in February. After doing some research I started all kinds of other things, have a huge vitamin & supplement regime, been trying the water cure, eliminating processed foods, warm baths, even tried spiritual healing (don't laugh). My Dr. really isn't much help. He pretty much wants to wait six months, if it doesn't get better on it's own then perform surgery (which one he has in mind, I have no idea). In his opinion, nothing else has been proven, so nothing else works & vitamin E might help. Had to talk him into prescribing me Pentox (has helped somewhat). I recently checked out the Peyronies Disease Labs website for topical Verapamil & it sounds like the greatest thing on the planet. Called the doc about getting a script for this & I can only get this direct from the company, so my insurance won't cover it if I can't get it at a pharmacy. One month's supply is $270!!!! This will hurt me financially, but at this point I'm willing to try anything. I'd have to make a lot of sacrifices in order to try this. Question is, should I do it?
Thanks for the advice Old Man. After doing more research it's sounding more & more like the topical Verapamil treatments are bogus & the injectable Verapamil doesn't sound promising enough to bother going through all that. The VED's sound pretty good though. Gonna have to bug my Uro about trying that. He's going to get sick of me (if he isn't already).
Brewpunk - A couple of observations from a newbie - I'm one who found success with the Verapamil injections. First - I would get a second opinion from another urologist. My urologist was very straightforward with me concerning ALL the options. Yours sounds rather dismissive of the problem. Second - I also developed Peyronies Disease relatively recently - maybe a reason the VI worked for me. I found the Vitamin E with the injections helped a little - as did just backing off from voluntary erections (i.e. no sex for a while).
Since I've stopped the injections (after 13) - I continue to improve. I don't use VEDs but I have found a little home "remedy" that seems to help with the improvement...I have a handheld shower nozzle that emits a nice soft spray - a nice steady spray strategically pointed to the penis (with a warm to slightly hot water) causes a natural erection. This "hydrotherapy" is certainly enjoyable and I continue to notice improvement in straightness and girth. The hardness of the plaque is noticeably decreasing.
I would at least try the injections.
vhguy,
Thanks for posting this. It is good to know that some do find relief through verapamil injections. I also tend toward trying them. I know there are a few experts on the forum here that I have high regard for but they had some bad side effects from the injections and do not recommend them. I had the injections and while I did not see improvement, I did not suffer any side effects. So I feel they are still an option for those who detect their Peyronies Disease early and are seeking various approaches to therapy. Clearly if the VI's don't help, or cause problems then they should be stopped.
It is difficult to recommend any specific approach as there are many different factors to each person's case (plaque size, degree of curvature, length of time of active phase, length of time of stable phase, etc. etc. etc.)
Thanks vhguy, yea my doc is very dismissive. I get little to no help from the guy. When you talk about backing off from voluntary erections for a while, I'm curious as to how long would you recommend backing off. My dr. said "use it or lose it." (his exact phase) when I asked him whether I should continue using it or leave it alone for a while. I called him back a few days later & asked him how often I should use it. His response was in a nutshell: "let the pain be your guide.", but at the same time he's also telling me to work through the pain. This has me very confused, though I do try to do something with it everyday to give it some exercise. Maybe this is the wrong approach, I dunno? I have noticed some improvements. The indentation is much less extreme & I've gone from painful, to sore, to a slight ache. Past couple of nights it was sore again. I feel like I'm getting much closer to normal again, but not quite there yet. Maybe backing off for a while is the key to pushing it to the next level of improvement.
Quote from: Brewpunk on October 29, 2009, 08:25:14 PM
I have noticed some improvements. The indentation is much less extreme & I've gone from painful, to sore, to a slight ache. Past couple of nights it was sore again. I feel like I'm getting much closer to normal again, but not quite there yet. Maybe backing off for a while is the key to pushing it to the next level of improvement.
I don't think the issue is about "pushing yourself through the pain". You need to ask yourself if you think this will bo way on its own. I don't know of anyone on this forum where their Peyronies Disease just went away. Do you only have pain, or do you have curvature associated with it? Pain could be a temporary inflammation. If you definitely have plaque and or curvature, then you need to try one of the many therapieds discussed on this site. You will find a lot of information about topical druges, oral meds, traction, VEDs, injections, and eventually... surgery. We encourage you to ask questions as you will find a lot of advice, opinions, and support here.
Les
Quote from: lwillisjr on October 29, 2009, 09:33:21 PM
I don't think the issue is about "pushing yourself through the pain". You need to ask yourself if you think this will bo way on its own. I don't know of anyone on this forum where their Peyronies Disease just went away. Do you only have pain, or do you have curvature associated with it? Pain could be a temporary inflammation. If you definitely have plaque and or curvature, then you need to try one of the many therapieds discussed on this site. You will find a lot of information about topical druges, oral meds, traction, VEDs, injections, and eventually... surgery. We encourage you to ask questions as you will find a lot of advice, opinions, and support here.
Les
I have no curvature, more of an hourglass indentation (which has been improving) & some plaque on the right hand side. Been on the Pentox for 2 months now & taking a ton of supplements. I also just started oxygen therapy (drinking food grade hydrogen peroxide) about a week ago.
While I'm able to achieve intercourse just fine, I experience the ache or pain before (while the indentation is filling up) & just after. Not quite sure if it'll go away on it's own, but I sure hope so. I will say it's better then it was 6 months ago when it first started.
Hi Brew -
My uro didn't give me guidelines for "backing off" sex - just said reduce. I was concerned about the "use it or lose it" and here's what my experience was...
My injections did away with 80% of the pain very quickly. I probably masturbated and had sex maybe three times a week. My morning erections became occassional. Around about my fourth or fifth injection - I actually had a difficult time getting an erection. So - I just let it alone - masturbated maybe once every couple of weeks - never very satisfying and barely erect. I had seen some "watch it wither" threads here and had almost resigned myself to it. Then, around the 11th injection - I started noticing pretty strong morning erections. I think that helped psychologically, too. I did a total of 13 injections - and I'm very happy now. Looking back - my penis seems to have gone through a "disfigurement" stage, then a "hardening" stage (while I was getting treatment), and now it seems to be getting back to a stable normal (although that may never be what "normal" used to be). My injections - btw - were two to three weeks apart.
My uro said (I know this doesn't agree with this forum) that it would get better and eventually go away. Again - I think a major factor is because I caught mine within a year or so of my symptoms starting.
As I know Dr. Levine uses Verapamil injections as a treatment before using surgery. Can anyone tell us if Verapamil was approved by the FDA for Peyronies treatment and if so in what year approx? Is it used in some other form of treatment? Musicman