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Author Topic: 50 yo, to start Xiaflex at the end of the month  (Read 515 times)

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testertaste

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50 yo, to start Xiaflex at the end of the month
« on: September 01, 2021, 10:42:29 AM »

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 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 Erectile Dysfunction 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 Erectile Dysfunction 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
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51 yrs old, 45-degree curve.
Discovered problem early 2020
Major depressive disorder but I’m not scary! :)
But seriously the psychological impacts of Peyronies Disease are the worst.

This forum is the most useful place I’ve found. Thanks!

Pfract

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Re: 50 yo, to start Xiaflex at the end of the month
« Reply #1 on: September 01, 2021, 03:05:53 PM »

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?

LWillisjr

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Re: 50 yo, to start Xiaflex at the end of the month
« Reply #2 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.
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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
65y/o  13 years Peyronies free
My History

bwg

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Re: 50 yo, to start Xiaflex at the end of the month
« Reply #3 on: September 02, 2021, 11:04:24 AM »

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
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age 68 Diagnosed with Peyronies 3/2020. 30 degree up and 20 degree left curvature. Happened overnight. Looking to start Xiaflex treatment shortly.

Mike_1024

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Re: 50 yo, to start Xiaflex at the end of the month
« Reply #4 on: September 02, 2021, 11:28:38 AM »

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.
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49 yrs, 2 yrs with Peyronies Disease.
First year wasn't bad. 
Second year has been rough.
I'm just starting to try to deal with it.

My history/status:
https://www.peyroniesforum.net/index.php/topic,16420.0.html

gsc55

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Re: 50 yo, to start Xiaflex at the end of the month
« Reply #5 on: December 07, 2021, 12:57:30 PM »

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).
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Age: 66
Erectile Dysfunction & diagnosed by urologist of Peyronie's disease. Problems started Nov 2020. Noticed significant left curve 60°?
Treating right now with oral vitamins.
Etc

Hawk

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Re: 50 yo, to start Xiaflex at the end of the month
« Reply #6 on: December 08, 2021, 12:38:11 AM »

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.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

john.doe.550

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Re: 50 yo, to start Xiaflex at the end of the month
« Reply #7 on: December 27, 2021, 12:46:35 PM »

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. 
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Age: 62;  Peyronies Disease diagnoses: MAR 2019;  Onset: Immediate & severe;  Treatment: Xiaflex, APR 2019 to early 2021, slow & steady improvement w/ notable Xiaflex improvement through 2021. Anticipate plication in early 2022.

BrettC

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Re: 50 yo, to start Xiaflex at the end of the month
« Reply #8 on: December 27, 2021, 05:25:49 PM »

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. 
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50 years old
Diagnosed just over a year and a half with 40-45 degree upward bend after starting with 60-65 degrees.
Completed one full round of treatments with Xiaflex (8 injections) 
Using Restorex and oral medications as well (Pentox, Cialis)

Pfract

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Re: 50 yo, to start Xiaflex at the end of the month
« Reply #9 on: December 28, 2021, 09:08:14 AM »

BrettC: Experience makes a world of difference when it comes to Administering xiaflex. How much does your provider have?

BrettC

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Re: 50 yo, to start Xiaflex at the end of the month
« Reply #10 on: December 28, 2021, 10:06:12 AM »

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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50 years old
Diagnosed just over a year and a half with 40-45 degree upward bend after starting with 60-65 degrees.
Completed one full round of treatments with Xiaflex (8 injections) 
Using Restorex and oral medications as well (Pentox, Cialis)

Hawk

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Re: 50 yo, to start Xiaflex at the end of the month
« Reply #11 on: December 28, 2021, 11:05:46 AM »

As the name suggests, the introductory board is to give us a place to introduce ourselves to the forum.

* Everyone gets one topic on this board

* The topics on this board are locked after 10 posts. This topic is now locked.

You are encouraged to continue the conversation by posting on other boards in the main form below.
Best Wishes!
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums
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