ARCHIVE: Verapamil - Injections & Topical Applications including Iontophoresis

[SteveW]

Coupla' posts missing, but I'll try to just give the headline news version.  

Went through 9 VI's, stopped at end of January, 06.  Since that time there has been slight improvement.  Bend and overall mass size seem (at least to me) somewhat improved.  Scheduled an appointment with Dr Pain for the 14th.  He did the "drop 'em and lets take a look" and wasn't as impressed as I was.  My doc has been consulting with other dr's and attended a casual get together of other uro's from all over the country as well as two Swiss dr's.  The general consensus?  Verapamil doesn't work.  Any improvement I have had, in his opinion may very well be natural.  Much to his dismay, the other doc's are all talking vacuum pump therapy.  He is currently doing some more checking and very well may prescribe/recommend a pump.  But wants me to continue using the Verapamil topical...since I've already got it and it "couldn't hurt."  Doc isn't convinced on the pump therapy, but is willing to entertain the idea and give it a shot.  Apparently, this change in therapy has been driven from the patient up with better results in some cases than VI provided.

OM, this is where you say "I told you so."    

He also will not recommend surgery for at least another year and may not then if I am able to get and maintain my erection.  Even if it is with Cialis.  He's a surgeon and realllllllly hates the idea of this operation and also said, he would ship my happy ass to Seattle should the surgery become our absolute last resort.  Good bent dick Dr. in Seattle?

[Old Man]

SteveW:

No, I would never tell anyone that I told you so. VED therapy has been around for quite a while, but the more popular drs. around the country are usually afraid to try something "new". If they did not think of it first, they usually don't want to try it.

And, again I will say that VED therapy does not work for everyone. I have now come to the conclusion that the VED therapy works best when the Peyronies Disease is caught at just the right stage. In my case, I caught it as it was just beginning (for the fourth or fifth time since age 24) after my prostate cancer surgery.

The uro who did my prostate surgery and I thought that it returned because during the operation, they place some sort of clamp on the penis to hold it out of the way. In the process it can be injured and can cause Peyronies Disease to form. If the patient has had Peyronies Disease before like me, the Peyronies Disease only takes a very slight injury to start up again. No clinical proof of this, but I know that it happened to me.

The VED therapy with the Osbon Esteem VED did eliminate my bend/curve and hourglass effect. I continue to use the VED at least on a weekly if not more basis just for maintenance of the penile health, etc.

Regards, Old Man

[SteveW]

My Dear OM,
I was joking with ya'.    I just found it interesting that my Doc brought up the vacuum pump subject and that this group of "heavy hitters" (his words) he had been discussing my penis with, were getting serious about exploring VED.  He virtually refused to restart injections.  

[Old Man]

SteveW:

I knew you were joking, but just wanted to bring out the point again that some doctors still refuse to accept the fact that the VED can and will help some Peyronies Disease patients. Know first hand, the things that the docs have told me over the past 50 odd years. They tried just about everything they could think of to help, but none worked until the VED therapy.

Anyway, thanks for the support you are lending the forum by stating what the docs you are connected with are saying now.

Regards, Old Man

[vjs]

Hello boys,
 I hope I am not invading a "boy's only" discussion but your home page invites partners, also.  My husband was diagnosed with Peyronies Disease yesterday. We were both shocked after reading the summary of the disease the urologist gave us.  I have just begun research for our options.  I am very concerned for my husband and want to help him as much as possible.  I have found your forum to be quite informative.  My husband is 53 and discovered his lumps no more than 2 weeks ago.  The uro says he must have had this for years to be this far along.  Both Vic and I are puzzled about that comment as I think we would have noticed something happening.  From your postings, I understand this can happen quickly.  The uro did not recommend the topical Verapamil since Vic's case is so advanced.  Compared to the descriptions you have offered of your own situations, his does not seem to be to that extent.   The uro advised us to watch for any changes in the next 3 months.  What happens then is still a mystery to us.  We took a couple photos to document.  He has some moderate-sized nodules but no curvature.  Vic states he can tell his erection is less full toward the head of his penis.  We are nervous about the prognosis of this disease.  I would appreciate any advice at this point.  

[vjs]

I just found the female side of this site, so I apologize for mis-using the forum.  I am not only a newbie with Peyronies Disease, but with this method of communication.  This is a time of discovery in many areas for me.  

[kbmw]

Hi VJS, I haven't been here for a few months but I am an old hand at this. I know I speak for everyone to say you are welcome to be here.

First I don't think the Uro that you are using knows much about Peyronies Disease. This stuff has sudden onset with sometimes radical symptoms.  That was my experience. You did not mention what the symptoms are that your husband is experiencing so I will make some general comments. One, get another uro. Two, if there is pain, wait. It is likely to go away. Three if there is a bend that that is minor and doesn't interfere with intercourse, consider yourself lucky and just live with it. Finally, once you get recommendations from the Doctor(s) for treatment, reread everything here and make an informed decision. This thread contains more information than most Doctors have.
Good luck.

[vjs]

Thank you so much kbmw.  I'll let my husband add the details of his symptoms if he wishes.  The support this site and it's contributors have offered to us is so much more than the copied info sheet we got yesterday.  Is there a list of recommended urologists?

[kbmw]

Yes, there are Urologist that have achieved some status on this site. But keep in mind that if you are contemplating surgery the recommendations you find here could be important. Beyond that even the best Urologist are still stuck in the same old treatments that have not been effective. It is my opinion alone that they exaggerate their "success" cases. There are big bucks in providing the conventional and ineffective treatment that they pedal. I am sorry to be sound so cynical but the evidence tells me that spontaneous remission is about the only hope and that is a slim one.
Best Regards'
kbmw

[SteveW]

vjs,
Welcome to both you and your husband.  Please encourage him to get involved here personally.  I have found a great deal of support and comfort just discussing "our" affliction with others who understand and can share.  Regardless of our individual outcomes, prognosis or problems, others here have been through it and are willing to offer support and advice based on experience.  I find it invaluable.  All my best to you both.  He is a lucky man to have you in his life.   SteveW

[zigwyth]

Well, Iv'e been mostly involved in posting in the VED section. Thought I would post here since I have started TV recently for Hourglass effect. Working on 2nd tube now. Was told 4 apps a day. Averaging 3 so far. PDLABS told me normally 2 a day is recommended. Tried like hell to get my insurance to pay for some, but no luck. In addition to the TV, I just started on the infrared lamp therapy ie. Joshua's post. Also corresponding with Old Man about VED therapy. Have been bidding on a couple on Ebay with no luck. May consider Angus homemade solution. Anyway, condition started immediately after a loud pop last December. Within a few days a 3/4" plaque developed at the base, creating the hourglass. Pain has subsided since starting TV, but nothing else to note. Will keep posting since this is some "Expensive stuff". Does cause itching. Zig

[j]

When I tried TV year a go, it was 2 applications a day. I see they've upped the recommendation.   And when I talked with them on the phone, they were still claiming 60% success (down from the original 90%). What are they claiming today?

I hope the $2800 I blew on this stuff went into further research.  

[Steve]

roadblock,

It's been a couple of months since you last reported on your Iontophoresis results...anything new to report?

Steve

[hopeful]

Phil- did you start- if so- who was your doctor?- and how is it working?

Hopeful


Thanks for the info.  I am very close to getting my HMO to approve ionto treatment.  

Phil
[/quote]

[Tim468]

I am new here, but will jump right in.

I am a 51 year old physician with Peyronies Disease. I have had it since I was 21 years old, and no, it did not seem to be associated with penile trauma - it just happened. I went to a urologist, and he man-handled me and finally announced that I would "probably" be able to have intercourse, if I "used Vasoline", and ordered me POTABA. I took home a huge bottle of the stuff and gagged on it for about a month but finally quit it, as my reading and experiences suggested it would not help. I never went back to a doctor about it.

I have been lucky (in some ways) compared to many stories I have read here. The curvature seemed to not progress too fast, and seemed to be kept at bay by fairly frequent sexual intercourse. When I was without partners in life, I took matters into my own hands.

Over the past 8 years, my erectile function has declined. The "plaque" is a diffuse problem, with a central cord running along the dorsum of my penis, and with a tightening of the circumference near the tip. I thus have an about 45 degree upward curvature, with a distal narrowing. It is increasingly painful and difficult to get hard. The strain of making myself hard with my partner leads to premature orgasm - though viagra has helped a lot with my confidence in that realm.

Recently, the curve worsened, the distal plaque seemed to tighten, and a new nodule formed on the left base, so that I lean that way now. It seemed my way of dealing with this over the years was no longer adequate, so I got back to work reading on what was new.

Note: I was simply using Vitamin E at about 2000 IU when it felt like the Peyronies Disease was active. Additionally, I would take an anti-inflammatory drug (Advil), and would work on "relaxing" things with hot baths and some tugging to apply a stretch. My goal was to "hang loose" for that *felt* exactly the opposite of the uptight feeling I have when it is active. For *me*, I can always tell when it is active, and activity has always been associated with a small incremental worsening of the problem. As I say, it seemed this approach was working for years, though I was never happy with the gradual changes, both physically and emotionally.

My reading suggests that topical verapamil is not likely to work, but that injections *may* work, and that iontophoresis *may* work a bit better than injections. Nothing works very well it seems. Additionally, it seems that the use of oral acetyl-L-carnitine may also contribute to a reduction in disease.

Like most guys, I don't like to read the urologists' caveats, like "longer lasting disease is less likely to respond to therapy", or "some patients worsened".

I am now on a routine daily dose of vitamins, with a heavy emphasis on anti-oxidant therapy, and taking 2-3 grams of carnitine a day (four weeks now). Additionally, I am starting the physion iontophoresis therapy with decadron and verapamil, using their cups (there are other dispensing electrodes available that are better and more flexible, but I decided to start with what is known)(one week now). I am trying to use an NSAID (Advil) at a pretty good dose.

The new left sided lesion at the base is smaller - not yet gone but obviously better. The rest is yet unchanged. Erections come easier, and are less painful (not yet pain free). The best data on Peyronies Disease are now coming out of Italy, and I will post a small bibliography if you want to read, and a good review. I will keep you posted (s).

Tim

Cavallini G, Biagiotti G, Koverech A, et al. Oral propionyl-l-carnitine and intraplaque verapamil in the therapy of advanced and resistant Peyronie's disease. BJU Int. 2002;89:895-900.

Biagiotti G, Cavallini G. Acetyl-L-carnitine vs tamoxifen in the oral therapy of Peyronie's disease: a preliminary report. BJU Int. 2001;88:63-67.

Di Stasi SM. Giannantoni A. Capelli G. Jannini EA. Virgili G. Storti L. Vespasiani G. Transdermal electromotive administration of verapamil and dexamethasone for Peyronie's disease. BJU International. 91(9):825-9, 2003 Jun.

[j]

Tim, I think that 's a good summary of where things stand  and it agrees with my own conclusions. TV, potaba, colchicine, vitamin E - have no value. Verapamil is something that seems to work in a petri dish, but has little effect in the real world. You'lve probably read about Dr. Tom Lue and pentox - a possibility. Regarding iontophoresis, check this link (see second paragraph from bottom) for results of a very interesting study:

  http://www.peyroniesassoc.org/2005_smsna_fall_meeting_sessions.htm

And there's AA4500, a drug under development (maybe) by Auxilium. It's an injectable form of clostridial collagenase - it might work, but it's been stalled in the FDA trial process for years. Maybe as an MD you have some way of finding out what's really going on.

Typical literature on Peyronie's describes a localized lump of "plaque" and the analogy has been used of taping a coin to a balloon, then inflating it.  Your case, as well as mine and many others, doesn't fit that description - instead we have a longitudinal band of fibrotic tissue that causes a curve rather than a sharp bend. So I suspect localized treatments like injections of verapamil (or collagenase if it becomes available) may not be a complete solution and I'm wondering abuot systemic antifibrotic drugs. Note that I'm not a physician and all of this is just my opinion base on what's on the web.

Actyl L-Carnitine is interesting. I've seen the summary of that Italian study but it seemed to me that the actual claimed improvement was pretty minimal.  

[totheleft]

Hi Tim,
I too am a physician and have also gone through a gamut of tx's. Like J's post I tried topical verapamil within a month and a half of my initial erectile pain and only a slight curve........absolutely NO improvement. The disease progressed despite the TV.  I wish you the best with the iontopheresis. I e-mailed one of the "senior" vp's about auxilium and as the previous post states, work is being stalled......again welcome to the forum........totheleft

[Tim468]

The review by Martin and Mulhall suggested that topically applied verapamil would not work, as it was not found in the tunica after application. Of course, that does not mean that it never got far enough in to anyone to work, ever. But it seems to be less likely to work based on that.

A very good review of the science and the possible mechanisms by which one could affect a plaque lesion is written by Cavallini:

Cavallini G. Towards an evidence-based understanding of Peyronie's disease. [78 refs] International Journal of STD & AIDS. 16(3):187-94; 2005 Mar.

This article has a great table that shows different mechanisms of treatment and the drugs that might work. If folks cannot find a copy of this online, I could mail them a pdf file (or might there be a place to store my copy of it here?).

I am interested in some of the other mechanisms of action for ROS scavengers or anti-inflammatory therapies.

1) Not sure I understand the differences between propionyl and acetyl carnitine (in terms of why the combination is better than just one).

2 Wogonin is a component of an herbal remedy that suppresses cell proliferation and the activation of monocyte chemo-attractant protein 1 (MCP-1) in vitro. I am learning more about it - but it is hard to find in Pittsburgh!

It would be nice to fight this disease on different fronts - perhaps promoting apoptosis, reducing activity of chemoattractants, fibrolysis, anti-oxidant activity, and so that is what I am trying to do, to sort of hit is on all fronts.

Of course, a little knowledge can be a dangerous thing. For instance, testosterone may help.. but testerone receptors are found in abundance on Dupeytrens contracture cells, and seems to activate 'em. This is tha main reason I like the EMDA form of verapamil - it goes where the action is, and for me, it seems like it *could* work since the lesion is pretty close to the dorsum of my penis. No side effects so far.

Tim

[j]

tim468, totheleft - do either of you also have any of the other 'superficial fibromatoses' - Dupuytren's Lederhose, Garrod's knuckles, frozen shoulder? I have all, and many posters here have more than one.  It seems to me that Peyronie's is always looked at in isolation but should be seen as part of a more general problem. Any medication that works on one should work on all. If TV, for example, actually worked as claimed, why wouldn't it be in use for Dupuytren's contracture - a relatively common disorder for which people have little reluctance to seek treatment?

[phil]

Hopeful,

I finally have an appointment for my first iontophoresis treatment in a couple of weeks.  It only took 7 damned months.
Treatment will be fore 4 weeks.  I'll let you know how it turns out.  

[hopeful]

Tim

Please explain from your post..

This is tha main reason I like the EMDA form of verapamil - it goes where the action is, and for me, it seems like it *could* work since the lesion is pretty close to the dorsum of my penis. No side effects so far.

I am still considering IONTOPHORESIS.. but cant get any substantial data.. this uses verapimil... electrically--


Hopeful

[Tim468]

A couple of answers to requests for clarification:

I like iontophoresis because it drives drug into the body right where the lesion is located. (this is similar to injections) and I like that, in general, over a drug I might have to take orally to get an effect at a (hopefully) targetted site. I like iontophoresis because a needle seems traumatic and possible to *miss*, to cause damage elsewhere, and to induce scar formation itself (I am reading here about folks who did papaverine injections and formed new nodules there).

The problem is that decadron is positively charged and verapamil is weakly negative, so the Physion folks feel that the two drugs are piggy-backed together (presumably with electrostatic bonds) and carried *together* into the tissue when a current is applied.

I emailed the folks who make the "Iomed" electrodes and their research doc said that it might make more sense to simply reverse the current for a second 20 minute hit to pull both the positive and negative charged drugs into the tissue. He stated to me "nobody knows the best way to do this yet". I finally opted to do it exactly the way it was done in the research protocol in Italy.

And to "J", I do have a very mild dupuytrens, but not the other ailments described. The skin over my palm is going to be *very* resistent to iontophosreis, though, because of it's thickness, the main reason this has not been tried yet (to my knowledge). Of course, if it works for my Peyronies Disease, I am going to give it a try anyway. I don't have the Dupuytren's Lederhose (foot problem) disease, but wonder if that might be more approachable via iontophoresis.

Tim

[hopeful]

Tim... are you using the Physion system.. or are you going to try it?- confused?

Hopeful

I like iontophoresis because it drives drug into the body right where the lesion is located. (this is similar to injections) and I like that, in general, over a drug I might have to take orally to get an effect at a (hopefully) targetted site. I like iontophoresis because a needle seems traumatic and possible to *miss*, to cause damage elsewhere, and to induce scar formation itself (I am reading here about folks who did papaverine injections and formed new nodules there).

[j]

Tim468 - agreed that the palmar fascia is hard stuff, but the Dupuytren's tissue is obviously easy to locate. If Verapamil actually worked, why isn't it being injected directly into Dupuytren's contractures? The discomfort of that procedure would be minimal, as compared to radical surgery - of which I've had 2.  

[Tim468]

Dear Hopeful,

I started myself on the iontophoresis. So far (one week in), no obvious difference, but it is early yet.

For J - I am not sure why verapamil injections have not been tried in Dupuytrens contracture. I will do a little reading on the subject.

Tim

[ComeBacKid]

I used the TV from PDL labs and some somewhat of a decrease in curve, and my penis softened, I did not get an 85% cure or whatever they claim.  Although it did work somewhat.  I'm only 22 and have Peyronies Disease. I got it at age 15 from a direct blow to my penis from a soccer ball with internal bleeding I believe.  I also tried the regular over the counter verapamil, which worked somehwat, but eventually I reached a wall where it was no longer effective.

I'm looking to try Iontophoresis, does anyone know what doctor will prescribe it to me, and where I can get the equipment?

Chris Sides

[Kimo]

Hello men, Kimo here, sorry i haven't posted or been around much, but i have been so sick for the past 6 months and still not over it yet..Anyway's thought i'd post on this one about improvement on condition...
My Peyronies Disease improved with prescribed Topical Verapamil and Vita-E and later i learned that massaging the plaque area also helped...After 5 months i had regained about 85% back to normal and i stopped using the TV because of finances...4yrs later i started using it again and did so for 12 months to see if i could fully recover all the way straight, but it didn't.....BUT, what it did do was break up the plaque completely.....In the past week i have noticed that now i have another hard plaque area with pain in a different area..I can't believe it but it's kinda resessed back inside my body where i would not be able to apply the TV if i wanted to...So i am going to keep taking vita_E and do the massage and be patient, and hopefully it will go away or at least quit hurting......thanks,,,,kimo

[Steve]

pudder135,

When I asked my Uro about Ionto, I got a blank stare.  I had to explain what it was to him !  Needless to say, he didn't/wouldn't prescribe it for me.

The only Dr I've been able to locate is Dr Levine in Chicago.  He offered to set up a phone consultation for an evaluation (I'm in Texas), and if he thought I was a candidate, he could supply the machine and meds BUT it wouldn't be covered by insurance, and thus the total co$t would be out of my pocket.

[zigwyth]

This is for Steve and Kimo. Steve, I live in Austin, Texas and my Doc look confused as well when I explained the iontophoresis.I am curious about how many others in this area might could be helped with this procedure if there was enough info for the Urologists. I have gone to 2 docs since I found out about this condition 3 months ago.I have been prescribed Topical V and been using it 2 months now. Very pricey. Kimo, I am glad I have found at least 1 person that has had success with it. I just started Infrared lamp therapy before I apply it(per Joshua post). Haven't been massaging though. Zig the Twig out

[Kimo]

Zig, just a note to let ya know what i experienced with the TV. Yes, it is gonna itch for maybe the first couple of months, it stops itching afterawhile.
 I didn't notice any change until the end of the third month and it was all of a sudden..I was about ready to give up but decided to keep going after seeing some change taking place. Before i started with the TV i was bent and twisted like a donut and in a lot of pain both soft and erect..Everyone thinks i'm crazy but i found a cure for the pain...I thought i'd try a magnet, i bought one that was 2inches by 4inches and wore it in my shorts while sleeping. It really did help, after 3 days my pain was going away and after 3 weeks i was pain free...

I'm glad i kept using the TV,,from the 3rd month to the end of the 5th month there was a lot of change..My penis came back to about 85% straight and was good enough for having sex with my wife and i stopped using the TV after 5 months as i just didn't have the finances at the time even though my ins was paying for most of it........And as i have said 4yrs later i began using the TV again to see if it would make me all the way straight, i used it for another 12 months and it did break upall of the plaque but i still have scar tissue left in that area, and i can live with that...Now it's the new nodule farther back inside that is hurting, so i am massaging that every morning while taking a shower....

If anyone has any more questions , feel free to im me or write a private e-mail and i will be happy to help in any way i can,,I would say most of all to keep a positive attidude and be patient and look to others for moral support and advise..What works for one may not work for another but anything is worth trying and don't give up to soon...I just hope that something i am able to contribute will help someone .....

Kimo

[zigwyth]

Thanks for the info Kimo. I sent you a list of questions to your personal yahoo account when you get the time.  

[Tim468]

I thought I'd post here what I sent a member in response to a private email abuot iontophoresis. Hope this helps someone else do it with a minimum of fuss and mess.

Here are some generic thoughts and suggestions:

1) Soak in a hot tub for a while immediately before iontophoresis. There are data to suggest that penetration of medications into the tissue is easier through well-hydrated skin.

2) Set up and prepare your application area first. I do it in bed at night. I pop the tops off of all my vials first, get out the syringe, get organized etc.

3) Do NOT shave the penis/scrotum, pubic region just before application. In order to get good adherence of the sticky pad (and to avoid hair-pulling pain), it makes more sense to shave the area THE DAY BEFORE. This includes the area at the top of the thigh where the grounding pad goes. Make it big enough to allow placement without catching hairs! Shaving at the base of the penis on the dorsum and a bit up onto the lower part of the belly, allows placement of the dispersal unit close to the base of the penis.

4) To draw up any liquid medicine, first draw up that amount of air, and inject it into the bottle, and then start to withdraw the medicine. Thus, the Syringe is filled with air to 4cc, and that is injected into the bottle of verapamil, and this makes it easier to withdraw the solution. Carefully and gradually pull out the needle, as you withdraw medicine, to get it all into the syringe. Hold the vial up to the light to be sure you can see the last bit come out.

5) After getting the larger volume verapamil, redraw about 2 cc of air into the syringe, and inject 1 cc of air into the dexamethasone vial. Them as you did before, withdraw the dexamthasone into the syringe, bringing the total volume there to 5 cc. Re-cap syringe carefully and set aside to use when ready. I gently mix the meds by tipping the syringe back and forth.

6) Place the dispersal unit on the dorsum of the penis (that is the part that faces "up" when you have an erection and it is sticking straight out in front of you!). Thus, the electrode connection on the dispersal unit is facing up. It says that it is easier to do if you first get a partial erection, but it is my experience that it is not too  easy to get or keep an ereciton when you are about to apply electrical current to your penis!!

7) Carefully insert the needle tip into the opening on the dispersal unit. I have found it is MUCH easier to get the fluid in without overflow if you gently lift the unit up and away from the skin of the penis (to which it is adherent). Conversely, if you push downward, it tends to bubble back up and out of the dispersal unit. When there is enough fluid to cover the inner tip of the electrode (just look at the unit when you get it - you will see  what I am talking about), you can cap it off with the connector to the stimulation unit.

The black connector goes to the grounding pad; the red to the penis end/dispersal unit. With the Physion unit you just turn it on. If you have a more fancy one, then what you do is set it to a 4 milliAmp setting and run it for 20 minutes (which is what the Physion unit does automatically).

Finally, in terms of insurance coverage, I did not even try to get it covered, although I might be able to if I really fight for it. But I do have a deductable set-aside from my paycheck called a "FlexFund" and I can get reimbursed (at least) for the costs of out of pocket medical care. Thus, these medical costs are paid by you, but you don't have to pay taxes on the money that you earned and then spent this way.

Tim

[ComeBacKid]

Hey guys,

I'm 22 with peyronies since age 15, I like Tim have ordered the Iontophoresis machine, VED, and appropriate Meds, it costed me $1700 totaly and I got it from Dr. Carroll in Orlando, Florida, its the physion version like Tim.  As Tim has described it sounds like a process to get everything set up, I should have it by 7 days I"ll keep everyone updated on the results.  I"ve used topical verapamil before and it HAS worked but it was no miracle cure, right now I've got some verpamail from PDlabs and still don't know if I trust those bastards, that study by Dr. Fitch said it was done for 1-3 months, yet they tell you to buy it for 6-12 months when you call them... chaaaaaaaaachingggggggggg.  The guy Dallas I talked to on the phone said they are in the second phase of FDA trials.  I don't know I'm still up in the air on TV, I think it does work a little, but there miracle claims I believe are way overstated.  I will try the iontophoresis until I run out and then switch back to the TV from PDlabs, I"m under my parents insurance and trying to get everything covered, since this disease is serious and real, but you know insurance companies, they dont want to pay for crap unless your in the ICU and dieing.  

ComeBackid

[Hawk]

ComeBackid,

I along with everyone here can relate to your total frustration, anger, impatience, and pain.  That in fact why this organization was formed and individually the reason each of us are here.  This is the place to freely express any results you experience, to expose any bad deal or any failure you encounter with any company, doctor, or organization.  I am struck by the way you described the people at Peyronies Disease labs and was waiting for you to justify that remark but never picked it up.   Do you have information about Peyronies Disease labs that you are not sharing with us?  Do you have strong evidence that leads you to mistrust them, or was that that based more on your frustration than any know shortcomings of the people at Peyronies Disease labs?

[ComeBacKid]

To Everyone,

I have absolutely no evidence to believe PDlabs is being dishonest,  I got my peyronies disease at age 15 after being hit in the penis in the flaccid state.  About two or three years after this I contacted a man from San Diego who sent me his PDlabs verapamil.  I used it, and after one day it softened my penis and straightened it out somehwat.  The results were amazing.  However then I quit usage until I built up the courage to visit a urologist.  I convinced him to prescribe me topical verapamil.  He did but this time I got it from a local pharmacsit who conviced me at that young age he could make it cheaper.  I used that for about six or eight months and it seemed to work somehwat.   After I ran out I quit using it for a few years.  Lately my peyronies has gotten worse after a long period (years of stabilzation) and I went back to this pharmacist and he has sold his compound center and retired.  I've ordered topical verapamil from Pdlabs and like Tim I've ordered an Iontophoresis machine, VED, and medicines for $1700 which will arrive next week hopefully by Friday.  I've just been extremely frusterated with a urologist who was ignorant and told me to wait, and tried to sell me a circumcision, which is absolutely ridiculous.  Typical American doctors will sell any surgery to make themselves rich, while they cut away your penis and your sensation.  I feel that the peyronies surgeries are similar in this fashion, and can really leave you with unwanted side effects. When I presented my claims of the use of topical verapamil success to Dr. Mullhall on the other forum, he discounted me, I'm probably the only one on here with some face in TV, however I just want to know if ANYONE knows anything about PDlabs being a scam before I drop thousands on their TV.  When I get my machine I"m going to try the Iontophoresis for a period of weeks like Tim and stay in touch with him since he has been doing it as well as me.  After this I will switch back to the TV.  My belief is that TV works a little, but Dr. Fitch has exagerated his results greatly.  In the original study if you read it closely he says treatment duration was 1-3 months.  However, if you call them personally they say you should  be on it at least 6 months... hmmm weird wouldn't you say.  I honestly don't know what to believe, I think we all need to pull together and share experiences without discounting each other in search of a cure or positive result.  I will keep everyone posted on how my Iontophoresis works out, with me and Tim both trying it out we should be able to determine if this works or not.

ComeBackid

[ComeBacKid]

After one week of TV from Pdlabs the only thing I've noticed is that my shrunken penis in the flaccid state seems to have more blood flowing to it, and its bigger.  My erection is still the same size and has the same bend. It is hard to determine at this point if it is any softer or any reduction in plaque.  I will continue to monitor i closely and keep everyone informed.  So far I've been following the instructions except that when i apply the gel I rub it in one time for about 2 mins, instead of applying gel for 1/12 mins and then taking a 5 min break and rubbing it in again for 1 1/2 mins again.  I usually leave on my applications for a minimum of 2 hours usually 3 hours, then shower off, I've been doing two applications a day, have only missed one application in 7 days.  Waiting on the Iontophoresis equipment which should arrive next week sometime.

ComeBackid

[ComeBacKid]

To everyone,

I was surfing the web and found this post by a lady named Kim, she had an email address posted and so I emailed her to see if I could find out more information and it came back as non existent, however it was posted years ago and it is not unusual for people to change their email addresses.  The treatment she describes is similar to what Dr. Carroll from Orlando said I should be doing, he stressed you need to use the IONO first to soften the plaque before you can use a VED or you will make the plaque worse.

"I have been working as a nurse for a urologist for four years. He treats Peyronies with Verapamil and we have seen great results. The difference is we use what is called Iontophoresis Treatment. The patient starts out with a penile ultrasound so the plaque can be identified and located. The patient then comes in once a week for a 20min treatment for 12 weeks. With these treatments we put liquid Verapamil on a patch that is attached to the penis and then the Iontophoresis machine is hooked to this and turned on. The patient just lies there for 20min while the machine works by infusing the Verapamil directly into the plaque. While the patient is on this treatment he is given a supply pack which contains Vitamin E capsules and Hydrocortisone 2% and a Vacuum Erection Device. The patient takes 2 Vitamin E capsules by mouth daily. He also opens one of the capsules of Vit E and directly applies to the plaque and also applies the Hyrocortisone 2%. He does this daily along with using the Vacuum Erection Device. This stretches the penis and helps work out the plaque. So not only are you getting 12 weeks of treatment but you are also doing these at home that will help move the process along faster. Ultrasounds are taken at the 6th and 12th visits also to chart the improvement. I have seen some great results and some happy patients. Feel free to ask questions."

Kim

[ComeBacKid]

I also wanted to say that I emailed Will Sheppard from Talon Inc. and called and left messages twice with no response in regards to the Topical Verapamil from PDLabs.  Either hes scared to be questioned by a 22 year old or hes just to busy for patients calling him... or maybe is he on a nice cruise since hes a millionare now?

ComeBackid

[zigwyth]

ComeBackid, what info exactly are you trying to get from Talon. I didn't even know about this place until I received an email from another member explaining they had won the lawsuit against PDLabs and are making the TV much cheaper. I am scheduled for another appt. with my Uro in 2 weeks and I want to be armed with any info. He had prescribed the TV from PDlabs in Feb. I am down to 2 tubes and because of it's price am considering whether to continue and/ ???or look into Iontophoresis. I actually asked him about this treatment and he wasn't aware of it. He has agreed to a prescription VED. Don't know if Ins. will pay though.  

[ComeBacKid]

I'm looking to talk to Will Sheppard personally and ask him exactly how the drug works, why PDLabs charges a high price for it, how I can reach Dr. Fitch personally, and in general just probe him to gage his credibility.  I also want to ask him some questions about if it really does increase blood flow which I have noticed.

I was in the same boat as you in regards to IONO, the one local urologist who specializes in peyronies disease didn't know anything about IONO delivery of verapamil at all.  He just started talking about injections with verapamil and rattled off statistics. He seemed smart and intelligent, he said with injections he's seen 50% of guys respond with improvment, at least thats the drift I got.  I think a lot of urologists don't follow the newest treatments like we do and you have to understand that.  You can contact physion directly if you can find a doctor to write you a prescription.  

Or you can call Dr. Carroll in Orlando, Florida, if you'd like the phone number just message me and I can give it to you.  With me he did a phone interview and was very knowledgable and says he talks to Dr. Levine from Chicago in regards to IONO treatment and its effectiveness on peyronies disease.  He said most people see at least some benefit from the treatment.  He recomends not using the VED until after a few weeks of IONO treatment as he says you have to soften the plaque first.  Old Man is the expert on VED's so you might try private messaging him for information on that.  Hope this helps.

ComeBackid

[j]

Will Sheppard (Talon) has been there from the early days of TV, marketing against PDL. I don't know the reak story but I think there was some connection between Easterling (PDL) and Sheppard, they had a falling-out and Sheppard conitnued selling TV on his own. A legal battle ensued and dragged on for years. Whether Sheppard is selling the exact formula patented by PDL, I don't know.

The mechanism is supposed to be this: verapamil stimulates cells to produce collagenase, an enzyme that will break down the excess collagen causing our problem. This has been demonstrated with cells of the appropriate type in laboratory cultures. Whether it actually works in the human body is another matter. There is also the matter of getting sufficient verapamil in contact with the fibrotic tissue. Verapamil is a large molecule which doesn't readily penetrate the skin. Easterling claims to have come up with a formula that carries it through the skin to the affected tissue. Some urologists have been very skeptical of that claim and performed an experiment which they say proves that no such penetration occurs. Here's the abstract:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12441945&dopt=Abstract

The numbers reported by Dr. Fitch in his study have to my knowledge not been duplicated and PDL now offers less optimistic numbers when asked. Neither Easterling nor Fitch have, to my knowledge,  made any public statements defending that study. PDL has also made statements about FDA trials for several years. I can't find any such trial on the NIH web site for clinical trials (clinicaltrials.gov).

[Hawk]

Any member that has ever had Verapamil Injections to treat Peyronies Disease, please go to https://www.peyroniesforum.net/index.php/topic,298.msg2773.html#msg2773

This is just a reminder to for those that missed the message.  Please follow the link and take the poll Only if you have had Varapamil Injections.  I will post the results as soon as we think everyone treated with VI has had a chance to contribute.

If anyone is considering VI in the immediate future you can contact me privately for preliminary results.

Thanks

The survey takes no more than 1-2 minutes

[ComeBacKid]

J,

My thinking was that maybe since Will had the fallout he will come out and bash PDLabs and Easterling, and maybe put an end to the debate about whether TV from PDLabs really works or not.  Perhaps he could tip us off if the study by Dr. Fitch was exaggerated, I'm just probing around, I found it interesting Will won't even call me back when I have a question.

When I talked to Dallas Dryden a few weeks ago from PDLabs he said they are in the 2nd phase of FDA trials, you say there is no record of PDLabs doing any FDA trials?  If you have nothing to hide then why lie if your PDLabs?  I think it would help to bring closure to this issue for a lot of people and find out the real deal, the scientific study you post also has credibility by credible doctors.  Also as you have noted to me personally PDLabs has produced no additional studies, doesnt defend themself when they get grilled by forums like this, and hasn't updated their webpage in years.  I"ll let my insurance make the payments to them.

ComeBackid

[Hawk]

Will Shephard has been very vocal in the past on the BTC and he is registered here but has not logged in for months.  You have to consider that he also makes his living selling TV.  It is unlikely that he is going undercut that product.  it is pretty difficult to say that "Their TV doesn't work but ours is great"

[j]

Maybe the fairest thing to say is that I'm disappointed that even after all these years, the urological community hasn't been able to get on the same page with regard to whether TV works or not.

[Hawk]

Exactly,

How difficult would it be to do a double blind study.  With the cost of TV I am sure you would get paticipants.

[j]

Well the problem is, there's supposedly been a thorough and conclusive double-blind study - the one by Fitch.  Which I guess was funded by PDL.  And on the other hand we have the paper by Marting et al, saying that TV has "no scientific basis".  This conflict - within the urological community - needs to be resolved. But who's going to pay for another study? So there it sits.

I think that urologists who are prescribing this stuff need to be more rigorous in their evaluation.  The one who prescribed it for me wasn't doing any measurements - just going by what patients told him. That's not good enough.  

[Kimo]

Hey Guy's, Kimo here, just had to jump in here and let ya'll know that the Topical V worked real good for me...I'm not trying to sell anything or make anyone's mind up for them, but i had a real good experience with it....The first time i used it , about 6 months into being twisted and bent like a donut,,i didn't notice and change until the 3rd month and by the end of the 5th month i had regained about 85% back to straight.....3yrs later i thought i'd try it again and see if it would take  all the way, it didn't,,,BUT it did break up all of the remaining plaque and all i have is scar tissue where the plaque was....In the begining my plaque was the size of a quarter and very painful......The scar tissue hurts a little when i'm erect but it's not bad..The second time around i was on the TV for about 12 months.....

I has been a yr since and now i just noticed about 4 weeks ago that i now have another lump recessed back inside my body but on the top side of my penis...It is really hurting when erect and having intercourse , but i try to ignore it,,,i do massage it when in the shower,,,as i know doing the massage does help,,,it did with the first plaque.....

I know that there is no one sure thing for everyone, but i'm glad that at least we can all come here and share our experience and maybe help someone in the process......

Malama Pono,,,,,,Kimo

[SteveW]

Kimo,
I am happy for you that Topical V worked! In my case, Topical + VI did nothing.  I have been stable the last few months I thought, and lately the pain when erect has returned and wakes me often during the night and is especially painful mornings and I think the bend is again approaching the original curve of about 90 degrees.  Not sure what to do...call the doc and get what?  Recommendations for surgery?  Learn to live with it?  Suffer in silence?        

[ComeBacKid]

Hawk,

If Will really wanted to sell more TV you'd think he would come on a forum like this more often and promote it, however maybe he doesn't want to be seen as a salesman and would rather let us spread the word to each other. All I know is that verapamil did seem to work for me when I used it, but after a period of time I switched over to a generic brand made by a pharmacist near my house who switched the application gel a few times that was mixed with the verapamil.  After awhile I reached a wall and saw no additional improvment.  The only explanation is that the verapamil increased the bloodflow, which it seems to be doing now, and it really didn't reduce the plaque.  

ComeBackid