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Author Topic: Nervous about xiaflex negative reviews  (Read 391 times)

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richie2222

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Nervous about xiaflex negative reviews
« on: November 14, 2022, 09:46:47 AM »

At some point in the future my urologist was saying I would be a good candidate for xiaflex.  However I randomly was googling xiaflex reviews and almost the entire website was people saying it made things much worse and they regretted taking the shot.  In my research it seems like it improves the curve marginally, maybe 15 degrees?  Is that worth it for the potential of problems people said they have.  The chief complaint was that it made the bend worse amongst other things.  Wasn't sure if I could link the webpage.  Just curious what the board thought about the pros/cons of doing it.  I'm pretty against it at the moment, but I realize my curve can get a lot worse than 20 degrees.

Also on a side note, the same doctor wants to inject the doppler thing and do a sonogram to see the plaque and measure the bend, not sure how I feel about that.  I know I have peyronies and does it matter if its 22 degrees or 19 degrees.  Is that procedure safe?
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41 M
20 degree curvature to the left
Diagnosed Aug 2022
Also have BPH (I think finasteride caused my Peronies)
Currently on 2.5mg cialis  and 400mg of Pentox (twice a day)
Started Restorex on 11/17/22

LWillisjr

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Re: Nervous about xiaflex negative reviews
« Reply #1 on: November 14, 2022, 04:35:59 PM »

I really don't read what is on other forums as I spend most of my time here. I've not heard of Xiaflex making things worse and only marginally making improvements. There were high hopes this would be a wonder drug when it came out but that hasn't been the case. Depending on the severity of one's curve it is something i would try before moving onto surgery as an option.
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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
66y/o  14 years Peyronies free
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richestorags

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Re: Nervous about xiaflex negative reviews
« Reply #2 on: November 17, 2022, 06:05:11 AM »


Richie, I too was spooked by the negative reviews of Xiaflex particularly on drugs dot com. Dr. Trost has a video where he provides specific criteria that Peyronie's patients should look for when selecting a treating Urologist. There are some doctors that are exquisitely trained in treating this disorder and then there are general urologists. My guess is that the negative reviews are coming from people who unfortunately were treated by general urologists. Dr. Trost made a point that patients should not rely on the Endo/Xiaflex physician locator; an interesting fact he brought up, a provider can get a bright check mark signifying that they have done over 20 Xiaflex injections in the past year by treating only three patients.
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Spontaneous Peyronies Disease onsite approx. 11/2021
Started diet, exercise and Peyronies Disease self care 08/2022:
-RestoreX 2 x per day
-Post-T-Vac 2 x per day
-Meds/Supplements: 5mg Tadalafil, l-arginine, citrulline, Vitamin E, Carnitine, castor oil and hope

FlyGuy876

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Re: Nervous about xiaflex negative reviews
« Reply #3 on: December 03, 2022, 10:14:19 PM »

I really don't read what is on other forums as I spend most of my time here. I've not heard of Xiaflex making things worse and only marginally making improvements. There were high hopes this would be a wonder drug when it came out but that hasn't been the case. Depending on the severity of one's curve it is something i would try before moving onto surgery as an option.

That is my thought exactly. After pricing surgery and this treatment option, I decided for this option first. I want to avoid going under the knife if need be as recovery time is longer. Between Rx copay and office copay, only $175 out of pocket for the treatment for round 1. Surgery would have been over $1,500.

The pamphlet and research also scare the crap out of you. I guess that is what they have to do but being done with two shots (1 round), nothing like you read.

I was at 60 degrees so we will see what happens. Since mine is also from an injury, the plaque is very small and confined. Hopefully this changes it a lot where it is livable with.
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richie2222

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Re: Nervous about xiaflex negative reviews
« Reply #4 on: December 04, 2022, 10:04:52 AM »

keep us posted
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41 M
20 degree curvature to the left
Diagnosed Aug 2022
Also have BPH (I think finasteride caused my Peronies)
Currently on 2.5mg cialis  and 400mg of Pentox (twice a day)
Started Restorex on 11/17/22
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