Hi, I hope you are all well.
I realized my Peyronies Disease in March 2020, though in retrospect I realized it may have been several years. Xiaflex was suggested more than a year ago but for various reasons it took this long. Anyway, yesterday I visited https://www.drugs.com/comments/collagenase-clostridium-histolyticum/xiaflex.html (https://www.drugs.com/comments/collagenase-clostridium-histolyticum/xiaflex.html) and I was shocked at the large percentage of men who were not only dissatisfied, but whose conditions were made much worse. I don't see that many horror stories here, I know nothing of drugs.com, and I know very well that the reviews could be cherry-picked or might well be outright fakes. But I'm scared.
I'm not a conspiracy theorist, but it seems possible doctors have legal financial incentives from Endo Pharmaceuticals to favor Xiaflex. While I trust my doctor (obviously!), I'm trying to collect some information before I ask questions.
The worst part of Peyronies Disease has been the psychological aspect. By far. The next two are my loss of length and the ED associated with Peyronies. I'm not completely sure exactly how much the curvature impacts my performance because I my sick is shorter and erections are difficult. I have tried oral ED meds and those help, but i believe I'm way too curved when I have a truly complete erection.
In short, I'm probably in the same boat as many, many other men. We each have Peyronies Disease and we each have a slightly different combination of symptoms, severity, and circumstances.
So, hello. And if anyone has anything to add about the apparent prevalence of xiaflex horror stories among those who have tried it for Peyronies Disease, please do!
Thanks!
TT
Hello and welcome!
There are Many guys here that had xiaflex injections so they will be able to provide their feedback and you can read their stories.
Doctor experience plays a major role in achieving best results. Is your doctor familiar with the drug in a profound way?
Early on there was speculation (and maybe hope) that Xiaflex would be the cure for Peyronies. The reality is that it isn't much better than its predecessor (Verapamil). I am not aware of any horror stories but I am sure they exist. I fully trust my doctor also and he does suggest trying Xiaflex as a first option.
Just make sure your Doctors has lots of experience with administering Xiaflex. I too was concerned after reading so many negative reviews. I did receive 3 rounds of two injections a day apart of each other. A few resulted in some ugly bruising and swelling. However after a few days all started to clear up. I also purchased the RestoreX traction devise and used it consistently as directed. My curve was about 35 degrees up and 15 to the right . I'm now at 10 degree up and 5 to the right. Its a slow process but with a experienced Doctor and you following up with Traction you should have good outcomes..... Traction both manual and ,if you can afford it , RestoreX or other form is half the battle....................Good luck
I heard the same mixed reviews, which is the primary reason I haven't pursued xiaflex with any urgency. Many seem to be helped by it (and concurrent traction /VED therapy does seem to be the difference maker). But equal numbers seem to have little to no improvement. I've seen the same anecdotes about the injections having bad side effects and causing additional plaques, but there are so many variables it's hard for me to know if those accounts are due to the injection itself or poorly administered injections. I have no real advice for you, but I wanted to validate what you're thinking because I've had the same hesitation.
Quote from: LWillisjr on September 02, 2021, 10:42:34 AM
Early on there was speculation (and maybe hope) that Xiaflex would be the cure for Peyronies. The reality is that it isn't much better than its predecessor (Verapamil). I am not aware of any horror stories but I am sure they exist. I fully trust my doctor also and he does suggest trying Xiaflex as a first option.
I see on your signature that you are 13 years Peyronie's free. Can you provide some details on how you were cured of it? (Newbie to this forum).
The success of Xiaflex is GREATLY influenced by the skill of the physician administering it.
PS: GSC, I recommend that you check out LwillisJrs posts to learn about his great success or start another topic. In this topic, we want to focus on TesterTaste's issues.
Xiaflex didn't give me a grand slam home run, but it did help quite a bit. It's critical to perform the modeling (physical therapy) that goes along with it. I hope you have much more success than I did because peyronie's is a horrible condition.
My urologist was quite frank with me, and said the best case scenario I could expect from a full round of Xiaflex would be about a 20 degree improvement. That is exactly what I got out of it mysteriously enough.
It can have some startling side effects - bruising, swelling, and they look very dramatic. But they subside, and it's all part of the process. I think like with any on-line forum you either get people who complain or people who exclaim.... the ones in the middle rarely comment on sites.
In short... I think it was worth it to reduce my curvature, and I would go through it again. But yes, I did get some bruising and swelling. And no, it is not a magic bullet by any means.
BrettC: Experience makes a world of difference when it comes to Administering xiaflex. How much does your provider have?
Pfract : I am seeing Mohit Khera who is one of the leading urologists in Houston, TX. He has tons of experience with Xiaflex. Between him and another doctor in his practice Larry Lipschultz they are pretty renowned. Honestly the best you can get in this area. But they are also very pragmatic, and up front about what may or may not work and to what extent you should expect improvement. I went from a 65 degree curve to a 40 or 45 degree angle, so I would say it was worth the round of injection series I went through.
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