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Author Topic: SOMEHOW or FUTURE Peyronie’s related  (Read 14643 times)

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MikeSmith

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SOMEHOW or FUTURE Peyronie’s related
« on: February 02, 2010, 05:55:58 PM »

I had another issue w/ swelling & scar tissue before - following surgery... I got kenalog injections & it resolved everything.  I know it can damage tissue in the higher dosages & over repeated injections... but I did a search for "kenalog" on here and never even saw it mentioned so i was just curious.
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j

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Re: Is Kenalog (Corticosteroid) Not an Option for Injection?
« Reply #1 on: February 02, 2010, 07:19:30 PM »

Kenalog is triamcinolone, which has recently come up on another thread.   Some MDs have been using for years on Dupuytren's, and apparently with some positive results,  but hasn't been tried for Peyronie's as far as I know.  In the case of Dupuytren's it supposedly causes some softening and reduction of the bad tissue and slows (or stops) the progression.
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MikeSmith

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Re: Is Kenalog (Corticosteroid) Not an Option for Injection?
« Reply #2 on: February 05, 2010, 12:37:35 AM »

Oh thanks. I guess nobody wants to be the first..?  (doctor or patient)

It is a pretty miraculous drug for swelling... not sure about scar tissue & all the stuff surrouding Peyronies Disease (which can get complicated & controversial).
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Tim468

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Re: Is Kenalog (Corticosteroid) Not an Option for Injection?
« Reply #3 on: February 07, 2010, 11:47:36 AM »

Every other steroid used for Peyronie's has failed in anything close to a double  blinded study. I think that is why no one has gone after exploration of yet another formulation of steroids for Peyronie's.

Triancinolone is not that helpful in DP or it would be used a lot more often with success.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

phamthebac

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Re: Is Kenalog (Corticosteroid) Not an Option for Injection?
« Reply #4 on: April 08, 2010, 03:22:09 PM »

After injection, corticosteroids work to reduce inflammation (heat, redness, swelling, & pain) in and around the joint. As a result you should feel less pain, swelling, stiffness and warmth and be able to function a little easier.
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hopeful_one

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Effects of PEG-ADA enzyme therapy on established penile fibrosis in mice
« Reply #5 on: March 15, 2011, 03:33:24 PM »

I know this article is a stretch as it's based on experiments with mice but it seems interesting so I decided to share it http://www.fasebj.org/content/24/3/740.full. The article is directly related to priapism but I found the following section of interest: "Effects of PEG-ADA enzyme therapy on established penile fibrosis in ADA-deficient mice". Here's more info about this study and this enzyme from WebMD http://www.webmd.com/sexual-conditions/news/20091104/new-cure-for-4-hour-erections.
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rd

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This is interesting, sometimes my erections would be so strong they would hurt, especially after finishing during sex. It seemed like at times I would get harder after finishing and feel discomfort in my penis. It wouldn't last for four hours but I still had discomfort until it started to go down. This was prior to my peyronies lump
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rd

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I wonder if this enzyme was what Dr. Levine was thinking of when he mentioned peyronie's suffers lacking a certain enzyme in the video that people were asking about.
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Dabak

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SOMEHOW or FUTURE Peyronie’s related
« Reply #8 on: April 03, 2011, 02:03:52 PM »

Just found an interesting article in physorg.com about a possible new treatment for heterotopic ossification (HO).  It references a paper,  "Potent inhibition of heterotopic ossification by nuclear retinoic acid receptor-γ agonists," Nature Medicine, published online April 3, 2011.  The article states:

The exact mechanism by which HO occurs is not fully understood, but trauma, surgery or deep burns cause local inflammation, followed by the arrival of skeletal cells that develop into chondrocytes (cartilage cells), and are then replaced by intrusive bone. Thus, 10 to 13 percent of orthopedic patients may develop HO, mostly without major symptoms, after knee replacement or other invasive surgeries. The incidence of HO is far higher in wounded soldiers—nearly 65 percent—because modern weapons cause extreme, wide and deep tissue damage.

This seems to be a variation of the processes that occur in Peyronies.  The researchers found that:
In the current study, Iwamoto and colleagues used retinoid agonists, a class of agents related to vitamin A, in mice that were genetically engineered to model HO. Specifically, they used nuclear retinoic acid receptor-γ (RAR-γ) agonists, which selectively target a regulatory pathway during cartilage formation—an essential step in the development of HO.
The RAR-γ agonists prevented HO from occurring in the mice, with minimal side effects. In contrast, control mice developed HO-like bone masses. Even more encouragingly, the protective effect appeared to be permanent, persisting even after drug treatment ended.

The authors cautioned that more in-depth preclinical studies must be performed before retinoid agonists are tested in humans with HO. They pointed out, however, that one retinoid agonist is already being used in a current clinical trial for another disease, and it might be possible to gain access to this agent from the manufacturer for clinical trials.
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Briden

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SOMEHOW or FUTURE Peyronie’s related
« Reply #9 on: July 06, 2011, 04:40:41 AM »


Hey everyone,

Interesting article on NBA.com today stating Kobe Bryant had a rare procedure done on his injured knee in Germany...got my wheels spinning as to usefulness to Peyronies...

Excerpt:

"In the PRP procedure, which takes about an hour, a small amount of blood is drawn from the patient's arm and spun in a centrifuge for about 20 minutes to isolate platelets. With guidance from ultrasound, the platelets are then injected into the injured area to try to stimulate tissue repair."

http://www.nba.com/2011/news/07/01/kobe-bryant-surgery.ap/index.html

thanks,
Briden
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rd

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Penile regeneration
« Reply #10 on: July 26, 2011, 01:50:53 PM »

When do you think we will see partial/full regeneration of a penis? I know they have done full replacements in rabbits, and with the recent news about the guy who's wife chopped off his penis then threw it in the garbage disposal. I started to wonder just how long it will be before we see this happen.
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trevorrr

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Re: Penile regeneration
« Reply #11 on: July 26, 2011, 09:37:18 PM »

I study that in School, Its difficult because you need the right match of stem cells also the most concerning question is the rate of growth When the time comes I'm estimating 9-14 years the question will be if a 40 year loses his leg how long will it take to grow back to appropriate length 18 years like the other one? immediately? I think were closer to just opening up the freezer and stealing your clones perfectly healthy johnson attaching it yourself and him back in the freezer.
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agent0

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does anybody have like hard scar tissue on the soles of there feet due to peyronies disease?


i have this hard bump on the back sole of my feet and im wondering whether its connected to my peyronies?
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0x5555

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It could be.  People who get Peyronies often also have something called dupuytren's.  Basically another form of scar tissue.

Go to a doctor to get it check out.
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fubar

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It is not due to peyronie's .Quite common to those with peyronies! Definitley something to be explored.Something of topic maybe?

Fubat
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Skjaldborg

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Article: Method identifies mutations that drive genetic diseases
« Reply #15 on: January 19, 2012, 11:54:33 AM »

This could have some interesting implications for the genetic component of Peyronie's disease. The article doesn't mention Peyronie's specifically but it is believed to be caused by a genetic predisposition to scar easily or have an overactive immune response to minor penile injury. If they could figure out how to shut the right proteins down, perhaps Peyronie's would be a thing of the past.

http://www.physorg.com/news/2012-01-method-mutations-genetic-diseases.html

-Sjkaldborg
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james1947

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Re: Article: Method identifies mutations that drive genetic diseases
« Reply #16 on: March 01, 2012, 10:41:21 PM »

Interesting research. I just hope they will continue the research to give real solutions for the diseases, one of, our Peyronie's.
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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The benefits of testosterone pellet therapy
« Reply #17 on: March 29, 2012, 09:11:40 AM »

An interesting research regarding testosterone level effects.
We have discussed the subject in the forum, here we have involved a special delivery way.

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

yep me too

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Re: Effects of PEG-ADA enzyme therapy on established penile fibrosis in mice
« Reply #18 on: September 27, 2013, 10:46:01 AM »

I know this article is a stretch as it's based on experiments with mice [...] I found the following section of interest: "Effects of PEG-ADA enzyme therapy on established penile fibrosis in ADA-deficient mice".

I came to and joined this forum today specifically to read the group's views about PEG-ADA enzyme therapy for Peyronies. Kind of shocked it is scarcely mentioned, even though this study cited by hopeful_one is about the "effects of PEG-ADA enzyme therapy on established PENILE FIBROSIS in ADA-DEFICIENT mice", since "penile fibrosis" is simply another name for peyronies disease.

Here is a link to a Univ of Texas (UT Health) article from 2009 http://www.uthouston.edu/media/story.htm?id=1423981 describing PEG-ADA as effective for priapism (erections lasting too long), but also noted that "PEG-ADA was associated with REDUCED PENILE FIBROSIS in one set of mice... with a deficiency of the ADA enzyme. No serious side effects were reported."

As we search for rabbit trails to treatments and relief, I for one am going to follow this one and see where it leads.
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yep me too

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Re: Effects of PEG-ADA enzyme therapy on established penile fibrosis in mice
« Reply #19 on: September 27, 2013, 11:28:11 AM »

I know this article is a stretch as it's based on experiments with mice [...] I found the following section of interest: "Effects of PEG-ADA enzyme therapy on established penile fibrosis in ADA-deficient mice".

Here is a CBS News article http://www.cbsnews.com/2100-500368_162-5536290.html from Nev 5, 2009 that reports on the UT Health research referenced in the article cited by hopeful_one, citing Dr. Yang Xia, MD, PhD --  " While studying mice missing the gene that malfunctions in kids with severe combined immune deficiency (SCID), Yang Xia, MD, PhD, and colleagues at the University of Texas, Houston, noticed that the mice suffered [...] penile fibrosis. Replacing the enzyme made by the gene -- adenosine deaminase -- [...] markedly reduced the animals' penile fibrosis.

"When we treated the mice, we do not see any side effects or any abnormality. Actually, the mice look better. We can [...] treat penile fibrosis," [said Dr. Xia].

Xia and colleagues have found that [...] penile fibrosis result(s) from excess amounts of adenosine in the blood.

"The discovery of excess adenosine as the causative factor for [...] penile fibrosis in mice opens up the possibility of treating and even preventing this [...] disorder," they conclude.

[Harinder] Juneja [MD] says he's trying to get a clinical trial under way. The good news is that the treatment, PEG-ADA, is already known to be safe in humans. The bad news is that it is very rarely used. As a consequence, it's an extremely expensive "orphan drug" produced with government assistance.

"This will take a while to get to the stage of a treatment," Juneja warns.
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james1947

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Re: SOMEHOW or FUTURE Peyronie’s related
« Reply #20 on: September 27, 2013, 04:37:07 PM »

yep me too

I don't understand your point.
It is not an available treatment right now, it will take very long time until/if will be available, so what we suppose to do?
Some of us following up this subject, but nothing new from 2009.
Can you tell us some more regarding your interest in Peyronies? Are you a Peyronies sufferer also?

Welcome to the forum
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

yep me too

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Re: SOMEHOW or FUTURE Peyronie’s related
« Reply #21 on: September 27, 2013, 06:58:22 PM »

I don't understand your point. It is not an available treatment right now, it will take very long time until/if will be available, so what we suppose to do?

But Adagen is most certainly available, it just has not been prescribed for penile fibrosis yet. I'm not even sure a clinical trial would be necessary. It's FDA-approved already. As the article suggested, even if clinicals were necessary for a new use, that process should be expedited since approval for another use has already been granted.

Quote
Some of us following up this subject, but nothing new from 2009.

Doesn't it take someone to 'light the fire' and get things going? Information dissemination is the first thing, I would think. That's why I was surprised there was so little (i.e., nothing) further about it on the forum.

Quote
Can you tell us some more regarding your interest in Peyronies? Are you a Peyronies sufferer also?

Yep, me too.  Recently (bout two years ago, after I turned 50).
Quote
Welcome to the forum  James

Thanks.
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james1947

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Re: SOMEHOW or FUTURE Peyronie’s related
« Reply #22 on: September 28, 2013, 04:23:40 AM »

yep me too

Xiaflex is approved for other usage than Peyronies.
Read what were the trials and are the difficulties to get it for Peyronies at:
Xiaflex - Trials and Treatment results - PDS - Peyronies Society Forums
If a medication is approved as treatment for one disease, it not means that FDA will approve it for an other disease.
Check also regarding Pentox. It is not approved also for Peyronies, even the leading Peyronies specialists are prescribing it.

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

yep me too

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Re: SOMEHOW or FUTURE Peyronie’s related
« Reply #23 on: October 01, 2013, 02:37:06 PM »

If a medication is approved as treatment for one disease, it (does) not mean() that FDA will approve it for another disease.
I spoke with a representative at a PEG-ADA manufacturer today who has become interested in PEG-ADA for treatment of Peyronies Disease and familiar with Dr Xia's experiments at UTHealth. Right now, PEG-ADA is only approved for treating SCID, which is an immune-deficiency disorder. Rep said clinical trials may possibly already be underway on people with normal immunity, which means it might be available for treating Peyronies Disease after that if results are positive. Anticipates about 1 year for a trial period.

yep me too
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james1947

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Re: SOMEHOW or FUTURE Peyronie’s related
« Reply #24 on: October 01, 2013, 03:21:53 PM »

yep me too

I am usually a very optimistic person, except when is coming to trials and FDA approvals.
I don't want to discourage you (and others) but I am proposing you to read the links bellow, it will give you a picture about that.
Auxilium invested huge amounts on the trials, FDA approval and marketing.
When Xiaflex will be available - Peyronies Society Forums [Page 3] Started April 2011
Xiaflex - Peyronies Society Forums [Page 8] Started August 2009
We are now in October 2013, it will be approved (maybe) in December this year.

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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