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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: Second course of Xiaflex injections  (Read 372 times)

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BadLuck

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Second course of Xiaflex injections
« on: January 14, 2022, 10:25:29 AM »

I went through an entire course(8 injections) of Xiaflex over a 8 month period.  I had very good results, with a significant curvature reduction.  I would like to try another course of Xiaflex, but my physician without giving reason is not willing to do so. 
Is there any reason why Xiaflex is not permitted beyond the first full course of injections?  Has anyone here gone through more than entire round of 8 injections? 
If you could post or PM me, I would really appreciate it.

Thanks everyone.

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Mid 50's
Diagnosed with Peyronies in 2014.
Treatments have included Verapamil injections, Pentox, and Xiaflex.
Currently using RestoreX

Torsten64

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Re: Second course of Xiaflex injections
« Reply #1 on: January 14, 2022, 12:50:44 PM »

I’d have to go to the US to get Xiaflex. I heard it is painful. Is it? I’m afraid to try if and I heard it only improves curve a certain percent. Does Xiaflex help restore length?
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63, Peyroines since 2014, no Erectile Dysfunction, lost relationship over it. Tried Pentox, did nothing. Don’t think traction will work. Lost length, bend upward maybe 30 degrees. From Jever, Germany

BadLuck

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Re: Second course of Xiaflex injections
« Reply #2 on: January 14, 2022, 04:10:13 PM »

Torsten, everyone's pain threshold is different.  My opinion, is it was pretty painless.  Similar to a wasp sting.  I did gain some lost length along with curve reduction. 


I’d have to go to the US to get Xiaflex. I heard it is painful. Is it? I’m afraid to try if and I heard it only improves curve a certain percent. Does Xiaflex help restore length?
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Mid 50's
Diagnosed with Peyronies in 2014.
Treatments have included Verapamil injections, Pentox, and Xiaflex.
Currently using RestoreX

Torsten64

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Re: Second course of Xiaflex injections
« Reply #3 on: January 14, 2022, 10:50:18 PM »

Thanks Bad Luck. That gives me some food for thought. I can still go to the US and get it I think.  ;)
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63, Peyroines since 2014, no Erectile Dysfunction, lost relationship over it. Tried Pentox, did nothing. Don’t think traction will work. Lost length, bend upward maybe 30 degrees. From Jever, Germany

Tobyg

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Re: Second course of Xiaflex injections
« Reply #4 on: January 15, 2022, 04:42:37 PM »

Hello, it is good to know that you can recover length, my problem is not the curve so I don't think I will use xiaflex, but does anyone know why it was removed from the market? Was it expensive? I remember reading forums from 2007 of people commenting on possible Peyronie's treatments and still nothing...
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30 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.

Torsten64

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Re: Second course of Xiaflex injections
« Reply #5 on: January 15, 2022, 06:59:53 PM »

Not sure why it was removed from the EU market. I’d have to read up on it, but I get the suspicion that the cost had a lot to do with it (it’s extremely expensive) and maybe it was viewed as something that just improved a „cosmetic“ problem (which is nonsense, of course.  Peyronies Disease is a real Disease).
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63, Peyroines since 2014, no Erectile Dysfunction, lost relationship over it. Tried Pentox, did nothing. Don’t think traction will work. Lost length, bend upward maybe 30 degrees. From Jever, Germany

BrettC

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Re: Second course of Xiaflex injections
« Reply #6 on: January 16, 2022, 01:33:11 PM »

My doctor would like for me to do another round of the shots.  But he says the insurance companies are just not willing to cover a second series these days.  All in for the shots, 8 injections is roughly $32,000.  That is a chunk of change.  I would say if you can get the insurance to say yes then go to a doctor who is willing to do it.  I think it would be worth going through another round. 

I was told I have these options after having gone through the first round: 
1) File for another series of XIAFLEX, and go through the insurance appeal process and hope it works out.  I could then maybe hope for more reduction in curve. 
2) Do a plication surgery.  Problem there is loss of length.  Doctor says he can do a "not perfectly straight" procedure that would get me down to a 15-20 degree range to minimize length loss. 
3) Wait a year and hope to get into a trial for the soundwave therapy that is coming out specifically for Peyronie's and not the Erectile Dysfunction kind.  Supposedly more intense treatment, stronger, and the way it is applied it targets plaque

Told me P Shot and Gainswave or Erectile Dysfunction Sound wave treatments are both not worth the money. 

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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)

Torsten64

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Re: Second course of Xiaflex injections
« Reply #7 on: January 16, 2022, 09:56:36 PM »

Thanks for your reply BrettC. It was very helpful.
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63, Peyroines since 2014, no Erectile Dysfunction, lost relationship over it. Tried Pentox, did nothing. Don’t think traction will work. Lost length, bend upward maybe 30 degrees. From Jever, Germany

Bill2020

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Re: Second course of Xiaflex injections
« Reply #8 on: January 17, 2022, 04:51:27 PM »

BrettC,

You mentioned a new type of shockwave therapy?

Would you please direct me to some information regarding this?

I would like to read some more about it.

Many thanks,

Bill
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*45 y.o.
*25° lateral curve
*Lost about 2cm in length and some girth
*2 sessions of PRP - made things slightly worse
*Currently taking Tamoxifen(low dose), L-Carnitine, COQ10, Vitamin E, Cialis (daily 5mg) and TRT
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