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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
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Author Topic: Side Effects  (Read 4779 times)

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Stabler

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Side Effects
« on: June 19, 2015, 08:32:14 PM »

I was researching about  the Xiaflex injections and was reading about the side effects that could you could have, while most were very basic like hives itching redness, etc.. there was also more serious ones such as blood in the urine, pain in the penis loss of ability to maintain erection and penile fracture which could need surgery for repair, has anyone encountered any of the more serious side effects?? or have the benefits outweighed the possible things that could happen1?

Also what is the difference between Xiaflex and Verapamil injections?
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nemo

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Re: Side Effects
« Reply #1 on: June 19, 2015, 09:08:48 PM »

Do a search and some reading on the Xiaflex thread(s). I think we had one guy who had sex too soon and thought he ruptured, but I didn't follow it closely. That's the only serious problem I recall, but again, do a search - most of our Xiaflex anecdotal experience is contained in a couple well-populated threads thanks to James's riding herd on things for us.

Nemo 
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51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

james1947

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Re: Side Effects
« Reply #2 on: June 19, 2015, 09:24:09 PM »

Stabler

Xiaflex is a new FDA approved treatment for Peyronies as it is braking up collagen
It was used and it is used long time for Dupuytren's disease. On some people they are related as both are collagen formation.
Verapamil injections and topical Verapamil was used in the past with very few success stories, many times worsening the Peyronies. You can read more about here:
Verapamil - Injections & Topical Applications including Iontophoresis - PDS - Peyronies Society Forums
Reagrding Xiaflex, as Nemo has stated we have "anecdotal" reports :) of our forum members that had done the treatment.
I don't agree with the "anecdotal", I think forum members don't have any interest to show better results that they had.
Reagrding Xiaflex side effects:
Xiaflex side effect photos from a few trial patients - Peyronies Society Forums
Other forum experience topics for Xiaflex:
FORUM XIAFLEX RESULTS - Peyronies Society Forums
Thread for Guys in Xiaflex Trial - Currently or Previously - Peyronies Society Forums
Xiaflex - Peyronies Society Forums
and many others.
Yo can find on the Internet also Auxilium Xiaflex trials results and assessments.

James
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Stabler

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Re: Side Effects
« Reply #3 on: June 19, 2015, 09:51:29 PM »

James

Yes I have been going back and forth between the two forums reading, my concerns came from the Xiaflex company itself. I went there to read on the product and as you said it was originally used for Dupuytrens then went in to discuss Peyronies.

I had not seen anyone here post anything about having endured a penile fracture due to Xiaflex but felt I needed to ask. Is Verapamil no longer used at all? It doesn't look like Xiafkex is available everywhere it that ins covers it.
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Glassglue

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Re: Side Effects
« Reply #4 on: June 19, 2015, 10:29:17 PM »

My uro just told me of his colleagues patient who suffered a fracture a week ago after xiaflex. He said they didn't do surgery to fix it because there would be nothing that would hold sutures after the xiaflex had softened all the tissue. Scare tactics? Maybe.
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Stabler

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Re: Side Effects
« Reply #5 on: June 19, 2015, 10:40:49 PM »

So what are this mans options now???
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Glassglue

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Re: Side Effects
« Reply #6 on: June 19, 2015, 11:05:32 PM »

I doubt that we want to know.
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Stabler

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Re: Side Effects
« Reply #7 on: June 19, 2015, 11:20:51 PM »

:(
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james1947

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Re: Side Effects
« Reply #8 on: June 20, 2015, 04:27:32 AM »

Stabler

Old school urologists still using Verapamil injections.
Very few success stories but many with worsening Peyronies after those injections.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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Re: Side Effects
« Reply #9 on: June 20, 2015, 03:19:39 PM »

Stabler

Old school urologists still using Verapamil injections.
Very few success stories but many with worsening Peyronies after those injections.

James

I don't think this meant the Peyronies was worse because of the Verapamil injections, I think it just meant it got worse because the injections weren't of any benefit. Is that correct James??? (That's how I took it anyway)
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Old Man

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Re: Side Effects
« Reply #10 on: June 20, 2015, 05:06:50 PM »

Stabler:

Yes, the Verapamil injections can and will have side effects with taking them. I took 12 Verapamil injections after prostate surgery in 1995 with each and every one causing bruising, hematomas and nodules. Finally, my uro and I agreed that damage had been done and I should follow another therapy.

I was prescribed a VED and used that device for just over a year to correct the damage done by the Verapamil shots. The VED therapy also corrected my curves/bends and hour glass effect which I think were caused by the needle injections.

Old Man
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Age 92. Peyronies Disease at age 24, Peyronies Disease after
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Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

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Re: Side Effects
« Reply #11 on: June 20, 2015, 05:23:39 PM »

Good to know Old Man, that was not how I read it.
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james1947

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Re: Side Effects
« Reply #12 on: June 20, 2015, 05:59:35 PM »

Stabler

As someone that didn't miss even one post on this forum, I can say from what I read that
Sadly, Verapamil injections made things worst for many people, not just didn't stop progression of Peyronies.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Stabler

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Re: Side Effects
« Reply #13 on: June 20, 2015, 06:08:27 PM »

So are there ways to see where you will fall on the Pro/Cons side of injection therapy BEFORE you go through with it. or is it just a chance you have to be willing to take? The risks can be so detrimental.
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james1947

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Re: Side Effects
« Reply #14 on: June 20, 2015, 06:14:04 PM »

I am against any injections because they can cause additional scar tissues, especially for Peyronies sufferers that they are prone to that.
So really it is a mater of personal decision if to take the chance or not.
Myself, was so excited about PRP that I made 4 sessions of 5 injections each (with no results). Luckily, no additional scars.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

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Re: Side Effects
« Reply #15 on: June 20, 2015, 06:35:46 PM »

Does the Verapemil cream have the same side effects? Or is it safer because it isn't being injected?
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james1947

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Re: Side Effects
« Reply #16 on: June 20, 2015, 06:40:11 PM »

It think Verapamil cream is safer. Just have to be aware that it may make skin irritation.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

hope4all

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Re: Side Effects
« Reply #17 on: June 29, 2015, 12:51:30 AM »

I stopped at 6 Verapamil injections, after I developed another nodule. They made my Peyronies worse and were psychological very difficult to deal with. The severe bruising and hematomas were awful. At least with Xiaflex I have seen improvements in my angle. Yes the bruising and discoloration are bad, but they have been temporary for me. I've had Peyronies for more than 6 years and feel it probably works best for those with more recent plaque development. Just my unscientific two cents.

I'm in the midst of my fourth and final round of shots and would have liked to see a more dramatic result. I'm somewhat happy the plaque seems thinner and shorter and the nodule that developed as a result of the verapamil shots is barely noticeable, but that damn curve is still very prevalent (to me). Mind you anyone else probably could care less.
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Re: Side Effects
« Reply #18 on: June 29, 2015, 10:38:09 AM »

James, I'd be quick to remind all that while Verapamil cream may indeed be safer than injections, there is no proof that it delivers any measurable amount of verapamil into the penis (see Levine's research which showed as much.)  Topical Verapamil was long ago debunked here as being of any real value to Peyronies Disease patients.  Many of us chased that rabbit down a hole.

Nemo 
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51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

kuaka

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Re: Side Effects
« Reply #19 on: June 29, 2015, 12:01:14 PM »

Safety is over rated.  The "safety features" added to most lawn mowers, for instance, make actually using them to cut grass quite difficult. 

Obviously there is risk involved with any treatment, and each of us has to balance the risk against the probability of successful mitigation.  I'm almost maxed out on the "non invasive" approaches, and appear to be making progress...painfully slow, but visible progress.  Injection is the first invasive process I will consider, if I cannot achieve what I need to with my current protocol.  Since the probability of successful mitigation with verapamil cream has been determined as low to non-existent, I will not be trying that one.
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james1947

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Re: Side Effects
« Reply #20 on: June 29, 2015, 08:38:08 PM »

Nemo

I know what you are saying regarding Verapamil cream.
I know that it didn't help and it is waist of time and money.
I am talking about the safety.
Definitely more safe than the injections ;D
Sorry if my post was misleading somehow.


James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

nemo

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Re: Side Effects
« Reply #21 on: June 29, 2015, 08:53:55 PM »

James, I just wanted to make sure Stabler67 didn't come away thinking Topical Verapamil was a viable treatment. I think a person would have just as much luck rubbing Vitamin E on their penis. Or their foot, for that matter!  ;D
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51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Pfract

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Re: Side Effects
« Reply #22 on: June 29, 2015, 09:31:08 PM »

Again... lots of information that could be compiled into a "super list" with the best effective treatments for newcomers!

james1947

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Re: Side Effects
« Reply #23 on: June 29, 2015, 10:10:18 PM »

From pfract:
Quote
Again... lots of information that could be compiled into a "super list" with the best effective treatments for newcomers!
Again, asked many times for a volunteer to do that but NO ONE volunteer :(
Very very sad about :(

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

james1947

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Re: Side Effects
« Reply #24 on: June 29, 2015, 10:13:07 PM »

Nemo

You are right about rubbing ;D
And not just vitamin E.
I tried the miracles of Virgin Olive Oil and many other "snake oil" ointments, sadly no one helped me  :( But it was pleasurable  8)

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

kuaka

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Re: Side Effects
« Reply #25 on: June 30, 2015, 12:35:25 PM »

James,

The problem with a "super list" of successful treatments is that there is such a wide variety of causes and manifestations to this horrid condition.  What "works" or "appears to work" for some can be totally ineffective for others.  One thing I am willing to make a commitment to doing is staying here long after I get "success" so that I can share my treatment and results with others who follow me down this path.

So far, I seem to be making progress.  In my home made traction device, I appear to be more able to stretch it out to the point of feeling the tension on the plaque itself...which tells me that I'm accomplishing what I want there.  On the VED side, I'm also able to feel that same stretching on the plaque itself.  What I've had to do is cut way back on the supplements, as they appear to be causing vision issues.  This is the same reason I dropped Viagra a couple of years ago, so my "circulation" seems to already be at a reasonable max.  I'm still doing the Ubiquinol, and will frequent-but-not-daily do the B6 and D3.  I'm going to continue with the Pentox/Cialis as the apparent progress manifested starting about five days into those treatments, so they get some of the credit in my book.
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Re: Side Effects
« Reply #26 on: June 30, 2015, 04:48:56 PM »

Kuaka

What you are saying is not new for me and not new for other long time forum members.
We are always saying:
What works for one is not a guaranty it will work for others. :)
This is the biggest problem with this disease.
Good or bad results from a treatment can't be taken as a guide for others.
Some treatments show results for many people, this is the reason I am proposing to try them:
VED, Traction, Pentox, low dose Cialis and CoQ10.
They are also treatments that have some research behind them and the leading urologists are prescribing them.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

kuaka

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Re: Side Effects
« Reply #27 on: June 30, 2015, 07:59:06 PM »

Sounds like you are recommending exactly what I'm doing then.  That adds a level of confidence.  :)
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