ARCHIVE: Verapamil - Injections & Topical Applications including Iontophoresis

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Old Man

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
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.

secondfourth

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

adam1951

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.

bentley

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

Steve

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

Hawk

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
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

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.
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

soxfan


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

Larry H

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

Joshua

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.  

soxfan

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.

Larry H

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

flexor

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

kevin

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.

soxfan

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.

Larry H

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

dcaptain

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

Steve

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

ThisSux

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::

Old Man

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
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.

j

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.  

august

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.

j

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.



adam1951

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.

SteveW

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.
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

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?





Hawk

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?

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

j

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."





Larry H

"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

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

august

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.

kbmw

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.

Old Man

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
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.

kbmw

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.  

Old Man

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
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.

kbmw

Old Man

QuoteHowever, 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.

Old Man

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
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.

kbmw

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

Steve

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

Old Man

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
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.

kbmw

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.

august

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.

j

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.    

Steve

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

august

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.

j

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.





SteveW

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

kbmw


august

My doc's experience with VI ... this was about a year ago ... 12 patients ... 2 better, 2 worse, 8 no change.