TOPIC: Xiaflex for Penis Retraction and Scar tissue

I had an implant removed from Dr Elist back in 2011 that he did in 2010 . Finally decided to see a Urologist. I was refer to UCSF. The doctor at UCSF did a ultrasonic scan. I had bunch of scar tissue where the linar scar was made. The doctor reccommened to wait for a new drug coming out called Xiaflex. I dont know how it works but I think its breaks down the scar tissue. He said additional surgery will only make problems worse, and put me on hold. Just FYI i lost almost an Inch in length from the Removal of the implant.

Any thoughtsssss!!!!!!

miracle7.5x6.3 wrote: @xiaflexed

Interesting read. We seem to be of identical viewpoints. Did you read my post?

Thanks - yep - I wrote back in the thread, curious about which version of the PD operations you had (I think there are 3 major options)...plus some other questionss for you. I am very impressed you are where you are...gives me major hope. I read the Peyronie\'s board sometimes and it\'s pretty depressing over there. Nobody seems to have recovered like you - and now to add PMMA - I wish I started this 2 years ago! It\'s really screwed with me in the last 3 years - and you know how it feels to watch your Dick shrink before your eyes. It\'s a lot worse than it sounds.

@xiaflexed

Interesting read. We seem to be of identical viewpoints. Did you read my post?

I just registered because your thread came up in a google search. If you have already been through some bad stuff w/ your penis, I\'d be weary - that drug has some bad side effects from the trial. It may work after 8 injections, but it only gave about a 30-40% improvement in angle.

It will weaken / dissolve scar tissue, but its not selective for scar tissue (vs blood vessels) - as clinical trial patients have experienced. It\'s also not as good at cutting through scar tissue because the collagenase molecule is very large...as is the molecule that makes up scar tissue itself. So, the enzyme denatures before traveling very far through the scar tissue...hence, why you need so many injections (and they retail for $3250 - docs will charge more). If the scar is bound to the tunica (unlike dupuytren\'s contracture where it is separate from the tendon) it\'s hard to inject without risking tendon (or tunica) fracture.

If you have scar tissue from an implant, it is off-label use, and xiaflex is obsessively tight-fisted about how they allow their drug to be sold. They have set up a fort knox system to only allow people who treat dupuytren\'s contracture to get the drug, and they refuse any requests to purchase the drug for off label use. They didn\'t test people with hourglassing or >90 degree angles in the FDA trial, so the thinking is that doctors will not even be able to legally give it to people with these variants of PD. And, insurance won\'t reimburse for anyone not in their narrow view of a PD patient (but all of this is TBD).

If anyone wants to talk about this in more detail, email me. I also know way more about this drug than most docs. The biochemistry of it has not been fully made public (or at least, not been made entirely clear) to doctors and patients.

@Mustang2020

Yes, it will.

Xiaflex' has actually been around for many decades. It is essentially injectable collagenase. It is designed to lyse/dissolve collagen (the proteins that constitute connective tissue). Trust me, as someone who suffered so severely from penile curvature (Peyronie\'s) that it prevented intercourse for over 10 years, I\'ve followed Auxillium Pharmaceuticals Xiaflex' clinical trials in Dupuytren\'s and Adhesive Capsulitis with extreme earnest ever since its induction. Initially, I had high hopes for this medicament. After years of comparing pathology differences in various connective tissue disorders and autoimmune responses, I had a change of unfortunately.

You\'ll notice that it is primarily being used to treat Dupuytrens with a palpable cord. The reason for this is collagenase will lyse/dissolve collagen both good collagen and cross-linked collagen/fibrotic tissue(s) so a definitive area of treatment is necessary. What this means to you is that if the product is not injected perfectly into the fibrous plaque, there could be irreparable damage done. Also, with fibrosis of the tunica albuginea, the plaque can be interwoven into the tissue akin to a spiderweb making a precise area to treat impossible. I likely know far more about Xiaflex' than most physicians. At one time, I perceived it as the \"Holy Grail\" for Peyronie\'s disease. I don\'t see this as being an effective or safe treatment. Providing the scarring and curvature is not too pronounced, does not cause you pain and you can have successful sexual relations, I advise against it.

Feel free to express these concerns with your GP/PCP or your urologist/andrologist. Alternately, print out this PM and express your concerns with your urologist. It would seem that at least your urologist is fairly well versed in Peyronie\'s as many either rarely encounter it and to a far lesser degree, effectively treat it. Most will prescribe Potaba, Vitamin E, Colchicine, Tamoxifen, Verapamil or other medication that likely will be of little help. Most medications exhibit the highest efficacy in the acute/inflammatory stage of Peyronie\'s. Once the chronic/stabilized stage is reached, aside from surgery (Nesbit/Plication, 16-DOT, Grafting, etc) there is little hope. It typically takes anywhere from 1 year to 18 months for the plaque to stabilize. If you are inside this window, nonsurgical treatment is your best option.

I lost it of length from the Removal of implant from dr. elist. If the scar tissue dissolves I\'m pretty sure I will get most of my length back. This is usually covered by insurance. It\'s worth a try should be available in the next few months

I wonder if Xiaflex can somehow weaken/destroy the collagen around the PMMA beads as a side effect???

I\'d be interested as well. From the little I\'ve read and understood it would actually seem to have more promise for guys who suffering from bending and shortening due to scar tissue from PE, than the plaque of Peyronies. My scar tissue feels like a cord that doesn\'t stretch enough, hence causing my penis to bend. To me that sounds far more like Dupuytren\'s contracture, which Xiaflex is meant to treat, than Peyronies caused by plaque.

Can you guys share with us your thoughts on this forum/thread, it will benefits all of us who have scar tissue..Thx!

Done.

@Qtip

PM me. I know all about Xiaflex.

This stuff is discussed quite often on Peyronies forums. I\'m not sure how effective it is, but I\'d imagine it will be better for guys who have scrring from the implant etc, than it is for actual Peyronies.

Was the worst physical and psychological event of my life. So happy it\'s behind me and I\'m now a sexual demigod. I\'m happy to help in any way.