Finding Xiaflex

[accessteam]

I am finding it almost impossible to locate a Dr. who uses Xiaflex to treat Peyronies.  Damn medical regulations prohibit it. Doctors won't give you a straight answer and often require a referral just to make an appointment just to tell you they don't use it.  Infuriating.

[pintor]

I'm having the same problem.  I suggest a doc who participated in the clinical trials, as they will be the first qualified to administer xiaflex.  Docs have to be trained by auxilium before they can administer the drug.  I am scheduled to be treated in mid february but it depends on whether or not they have the drug.  Im really anxious and tired of waiting for this.  Good luck.  

[ThisWontWork]

Forget about Xiaflex - it wontwork! I know because I participated in Phase3 trial. The stuff injected have a half life of approx 24 hours and will only affect the cell structure at 1-2 mm from the injection site.
The stuff is at least 25 years old. Goggle "Dr Gelbard" and you will find his tests.

You tell me: Why didn´t the inventor(Gelbard) bring the stuff to the market? You should realise the answer is : he did know that the stuff would not work.

[pintor]

Sorry for your experience.  However, since it is the only treatment approved for Peyronies Disease, it obviously showed efficacy in some patients in the clinical trials.  My doc participated in the clinical trials and he recommends it.

[Gap]

Regulations have been the problem, more than the science. To bring a product to market in the US you must prove that the product provides a "significant" benefit to the patient. The last studies that Gelbard and the other participating docs performed were two of the largest urology studies on record. This is the best - only - option, unless you want to go the surgical route. I, like the rest of you, wish it would all just go away, but for now we work with the tools we're given.  

[pintor]

My doc, who participated in xiaflex clinical trials, has now been trained and is registered to provide this treatment.  Next step I was told by Auxilium was for me and my doctor to sign a form and submit it to Auxilium to evaluate my ability to pay.  At this point I am waiting to hear back from them.  I have insurance so it will be interesting to see how much they will pay.   If you havent found a registered Doctor maybe you could contact Auxilium and ask them for a list.  

[emasculated]

Apart from the not so overwhelming studies, do we have any success stories with this stuff on this board? Could one point me to some?  

[liber]

i've had two cords for two fingers broken using xiaplex for dupytrens. it weakens the scar type tissue so it can be ruptured under force. xiaplex does not remove the problem, it is feasable that more scar tissue can build once again. therefore it is not a cure mere management of the condition, i presume the same is true regarding peyronie's.

[MUSICMAN]

You might go to the board that for "Improvement/Success/Musicman" for information you are looking for.

[itsme]

An intervies with doctor Gelbard: https://www.youtube.com/watch?v=5w5f1PMC8k4
It seems he believes in the treatment.