ARCHIVE: Verapamil - Injections & Topical Applications including Iontophoresis

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Hawk

Any discussion on the topic of Verapamil in any of its forms or various applications
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Old Forum

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.

Old Forum

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..

Old Forum

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?

Old Forum

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.

august

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.

Larry H

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

Steve

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?
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

august

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.

Steve

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.
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

august


Steve

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).
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

august

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.

Barry

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  

august

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.

Hawk

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.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

nick

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.  

Barry

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.

flexor

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.

Barry

Flextor,
For you and anyone interested the url below is direct to the US patent office.

  http://www.uspto.gov/


Best,
Barry

kbmw

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.

mezz

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...



nick

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.  

mezz

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.  

 

SteveW

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?  
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

Hawk

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.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

SteveW

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.  
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

Steve

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.
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

bob

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

SteveW

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.
     
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

SteveW

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.
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

kevin

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

mezz

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.  

SteveW

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.  

20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

j

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.


bob

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

SteveW

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.
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

j

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.  








SteveW

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.  
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

steven

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

mezz

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.  



 

SteveW

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.
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

Larry H

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

SteveW

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.  
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

Steve

: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.
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

Old Man

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
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

SteveW

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.
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

Steve

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).
Topical Verapamil,
12 Verapamil shots (ouch!),
Now VED - Too many Weeks,
Still 70 Degrees :(

Old Man

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
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Larry H

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."