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Author Topic: Any follow up on the Xiafelx Trials?  (Read 4323 times)

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IhatePD

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Any follow up on the Xiafelx Trials?
« on: June 25, 2013, 06:52:45 PM »

Does anyone know of any follow up reports on the patients from the Xiaflex trials? I know it hasn't been long, but I am very curious to see what happened with Peyronies Disease suffers who had shown improvement in the trials after a year or longer.

I would love to hear from any of you out there that had positive results to see how the results are holding up after a year or more. I know that the injections were followed up with "modeling" which served to break up the plaque. I want to know if the plaque reformed again over time or if the improvements see to be lasting.

Like many out there, I am hoping that Xiaflex might be part of the solution.
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MUSICMAN

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Re: Any follow up on the Xiafelx Trials?
« Reply #1 on: June 26, 2013, 11:57:25 AM »

Good question on the follow up. If you read my story and improvement under "Success" it explains my condition at the end of the Xiaflex trial. I have remained in the same condition. I like to read posts on the forum to see how things are doing with the FDA approval. I know some have had bad reactions, but that seems to happen with all drugs new and old. Remember there is hope and there are miracles. Musicman
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IhatePD

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Re: Any follow up on the Xiafelx Trials?
« Reply #2 on: July 01, 2013, 07:41:13 PM »

Musicman,

Can you elaborate on your present condition? Is the plaque still there? Is it "broken up"? Does your shaft feel strong while having intercourse? Did you regain most of your original size?

Thanks!
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IhatePD

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Re: Any follow up on the Xiafelx Trials?
« Reply #3 on: October 07, 2013, 07:04:26 AM »

Quote modified by moderator
Can anyone out there that went through the Xiaflex trials give us an update on your progress and current condition? I for one would like to know how you are making out now that some time has passed. See  my previous posting. I think a lot of us would like to know.

Thanks
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IhatePD

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Re: Any follow up on the Xiafelx Trials?
« Reply #4 on: November 13, 2013, 05:29:29 PM »

I had my six month follow up with my urologist today. I took pictures of my erect penis six months ago and again right before my follow up. My upward curvature went from about 45 degree to about 30 degrees and my curvature to the left went from about 25 degree to about 5 degrees.

Since my first visit, my condition had worsened before starting to improve. I also have distal narrowing that got worse from my first visit but seems to be slightly improving now. I believe this is from the VED 3 cylinder protocol I am using from this site.

I use traction about 4-5 hours per day, the 3 cylinder VED protocol, Pentox 3 x 400mg daily, Acetyl L-Carnatine 3 x 1000 daily, L-Arginine 3 x 1000 daily, Ubiquinol 4 x 100 mg daily and Cialis 2.5 mg daily.

Aside from the Pentox and supplements, I believe the VED has helped with my distal narrowing and the the traction has helped with the curvature. I lost about 1 month of therapy due to overdoing the traction and VED causing a blister on my glands and then by starting the therapy again too soon causing a blood blister. I am paying much more attention right now.

I asked my uro about Xiaflex as he was part of the trials. He said that 6 of his 8 patients had success using it. The two that did not had already calcified. He said that the average improvement was about 40% but those with softer plaques improved even more. He did not think that Xiaflex will help with narrowing of the penis but overall, he is very positive about it and will recommend it strongly to his patients that he feels can benefit.

I asked if he had further follow up with the trial patients and he said that the only patients that live locally had the calcification and negative results. Interestingly, the other patients were all doctors who traveled from as far as Texas to the Philadelphia suburbs to have him treat them. That gives me hope that I have chosen the "right doctor."

His name is Dr. Michael Metro in East Norriton Pa for those who are interested. He is also aware of this website.
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james1947

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Re: Any follow up on the Xiafelx Trials?
« Reply #5 on: November 14, 2013, 04:41:29 AM »

Good news's IhatePD.
Wish your improvements will go forward this way

James
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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

wingwalk

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james1947

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Re: Any follow up on the Xiafelx Trials?
« Reply #7 on: November 20, 2013, 10:17:14 PM »

wingwalk

Thanks for the update.
My problem is that we still don't know when and if will be approved for Peyronies treatment by the FDA.

James
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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

RoyHobbs

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Re: Any follow up on the Xiafelx Trials?
« Reply #8 on: November 21, 2013, 02:44:43 PM »

James-

They are due to rule on approval by Dec. 6th.
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james1947

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Re: Any follow up on the Xiafelx Trials?
« Reply #9 on: November 21, 2013, 03:39:36 PM »

Hope so :)

James
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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

agent0

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Re: Any follow up on the Xiafelx Trials?
« Reply #10 on: November 21, 2013, 07:54:36 PM »

me too james. i cant wait!
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james1947

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Re: Any follow up on the Xiafelx Trials?
« Reply #11 on: November 22, 2013, 09:48:26 PM »

Hope so not for myself, as my plaques are all calcified and I have venous leakage that causes Erectile Dysfunction.
But I am happy for all the forum members that will benefit from Xiaflex  ;D

James
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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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