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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

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Author Topic: Xiaflex Question  (Read 2917 times)

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QuackAttack

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Xiaflex Question
« on: December 20, 2015, 06:55:46 AM »

Having peyronies for the past 6 months and not experiencing any pain, thankfully, during intercourse, but a little bit of a dull feeling when flacid, I am wondering if my case would be considered in the chronic phase yet.  At what point would Xiaflex would be something that the Urologist would consider as a treatment option - active or chronic? I went to the Urologist in early October at Walter Reed, but I wound up seeing the Uro's PA and was prescribed Colchicine, but the side effects of diarrhea so bad being in the bathroom every 45 minutes to 1 hour, I stopped and consulted by phone and was told to take something to back me up and continue on. This wasn't palatable to me because my body was clearly telling me that the drug was a problem otherwise I wouldn't have happened.  I had some hope when I go see the actual Uro in January about Pentox, but seeing some threads about how people got worse after stopping Pentox is making me think again about taking that. So, I am looking for advice on Xiaflex from anybody that has used it.
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gringoviajero

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Re: Xiaflex Question
« Reply #1 on: December 20, 2015, 11:04:35 AM »

Many here have tried it, and several are currently in treatment.  You'll find us easy enough.  I began cycle one on November 30.  So far, nothing, or at least nothing significant.  There are many questions surrounding Xiaflex.  Firstly you'll want to see if your insurance will pay for it.  If you're under Obamacare, now's the time to find out before you sign up for next year. As the chances of Xiaflex working are 50-50 at best, if you shell out $7000 per cycle and see no result, you'll likely want to shoot somebody, maybe yourself.  I had high hopes as I have soft plaque, but now that the initial swelling and discoloration have disappeared, I'm right back where I started.  Others have been much more fortunate.  My next treatment will be next month.  Fingers crossed.
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QuackAttack

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Re: Xiaflex Question
« Reply #2 on: December 20, 2015, 02:51:31 PM »

Gringo,

Are you in what is considered the acute phase or chronic phase? Since I have military insurance, I don't know what to expect and I am not under Obama Care, nor do I think it would benefit me from a coverage standpoint on Xiaflex.
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gringoviajero

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Re: Xiaflex Question
« Reply #3 on: December 20, 2015, 07:04:34 PM »

Chronic.  As I understand, they won't give you Xiaflex until you are stable, i.e. past the acute stage.

Check on your coverage; that's the first thing to do.  If they pay the tab, you've nothing to lose.  If they don't, you're taking a big risk, so you better be able to afford it.
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LWillisjr

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Re: Xiaflex Question
« Reply #4 on: December 24, 2015, 10:22:02 AM »

Chronic.  As I understand, they won't give you Xiaflex until you are stable, i.e. past the acute stage.

I don't know if that is correct. If I recall for the clinical trials they wanted you in the acute stage. You were not eligible for the trials if you were chronic/stable. They wanted the best results possible for the trials.
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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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Jonbinspain

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Re: Xiaflex Question
« Reply #5 on: December 24, 2015, 11:47:44 AM »

I think what L Willis is saying is correct. I emailed the company some while ago and specifically asked if Xiapex would work on calcified plaque. I received a reply informing me that they were not sure as it had never been tried as part of their trials.

They didn't say it wouldn't work, but basically that they really didn't know.
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james1947

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Re: Xiaflex Question
« Reply #6 on: December 26, 2015, 10:03:18 PM »

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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum
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