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Author Topic: Xiaflex result  (Read 3661 times)

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BGBoy

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Xiaflex result
« on: July 07, 2016, 02:51:54 AM »

As a Peyronies Disease sufferer, I had the good fortune, after having been told by my GP that there was no treatment and to go home and get on with my life, to find Dr Raheem, operating out of UCLH in London and got myself onto a trial for Xiaflex.

It made a significant difference to me, my self-esteem and my sex-life. It moved me across some kind of threshold from 'this is very uncomfortable and sex isn't really so enjoyable any more', to 'well, many men have curved erections and this is not uncomfortable any more so with a little imagination, sex is OK'. It's a treatment I'd endorse. (And I'm about to continue with the treatment, optimistic that my improvement will continue.)

There was a piece in a UK newspaper written by a Peyronies Disease person who had the Nesbit procedure. I replied to his article. You can find the piece here: https://www.theguardian.com/lifeandstyle/2016/jun/10/experience-90-degree-bend-penis#comments. If you scroll through the comments on the piece, you'll find a long one that refers to Dr Raheem at the end. That's mine.

If you have Peyronies Disease, I'd strongly recommend that you consider the Xiaflex route - and Dr Raheem. To quote from my post on the newspaper site:

'The clinic I approached was that of Dr Ralph (https://www.uclh.nhs.uk/OurServices/Consultants/Pages/MrDavidRalph.aspx) and the specialist who dealt with me through the trial was his his colleague Dr Amr Raheem (https://www.researchgate.net/profile/Amr_Raheem).

Dr Raheem is a splendid doctor, which is good. After all, you have to trust the man who injects your penis.'
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james1947

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Re: Xiaflex result
« Reply #1 on: July 08, 2016, 04:10:21 AM »

BGBoy

Quote
scroll through the comments on the piece, you'll find a long one that refers to Dr Raheem at the end. That's mine.
Can you give us some more information regarding your Peyronies and how Xiaflex helped you instead to scroll down the articles and the chat?
Can't understand too much from your post except that you are a big fun of Dr. Raheem :(

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

kuaka

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Re: Xiaflex result
« Reply #2 on: July 08, 2016, 10:55:30 AM »

Yes, we are all familiar with what Xiaflex is here, and have seen reported "mixed" results from it.  If you would present your results, along with a more detailed description of your specific case, it would look less like a commercial plug for a Dr.
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Gutted

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Re: Xiaflex result
« Reply #3 on: July 08, 2016, 11:20:58 AM »

I agree... it would be great to have more information on the particulars of BG's condition and his Xiaflex results but just to assure others here not from the UK..... both UCLHospital and Dr Raheem are National Health Service (i.e free healthcare on the state) so this is not a commercial plug.

Dr Raheem also told me about this Xiaflex trial at the beginning of the year as well, so I know it's a true story. The trial was an effort by Dr Ralph's team at UCLH to get Xiaflex approved as a legitimate treatment on the NHS so that it could be provided to patients by the state at zero cost
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james1947

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Re: Xiaflex result
« Reply #4 on: July 08, 2016, 08:16:46 PM »

Have nothing against Dr. Raheem, Dr. Ralf and UCLH and I would like to know how BGBoy was helped by Xiaflex.
But it is really not polite from anyone, not just a new member in his first post to send you to to scroll down on an article to read his post at the end of the remarks. Or maybe in the UK is polite, I don't know.
BGBoy can just copy/paste her.

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

b1gmike

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Re: Xiaflex result
« Reply #5 on: July 12, 2016, 07:09:03 PM »

Hi all.

I have been discussing potential Xiapex/Xiaflex treatment with Mr Ralph (St Peters Andrology Centre, London).  One thing I am confused about is the treatment cycle being proposed.  In everything I have read, including the trials, Xiapex treatment seems to consist of 3 cycles.  Each cyle being 4 to 6 weeks apart.  Each cycle appears to comprise 2 injections, with these administered 2 days apart. 

The treatment I am being offered comprises 3 cycles, however, each comprises only one injection followed by self administered "modelling" using a vacuum pump (I dont think this really classes as modelling).

I am now unsure of whether what I am being offered is actually the recommended course.  Given everything I have read, Mr Ralph is clearly renowned in this area but equally, this course does not appear to align with what I am reading elsewhere.

Anyone have any recent experience in UK and the current "best practice" in term of treatment plan using Xiapex?

Many thanks
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Crooked_Stick

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Re: Xiaflex result
« Reply #6 on: July 13, 2016, 11:22:03 AM »

I'm in the US but that program doesn't sound right. Here the standard protocol is 4 rounds at six weeks apart, with each round consisting of two injections two days apart. In my case (I just finished the 4th round) it took all 4 rounds to see good results. I will soon report a full update on my experience.
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Born 1960, Diagnosed 2013
Initial 40 degree bend, 1" loss, Xiaflex 3 rds of 2 injections
Current 25 degree bend, no palpable plaque, 1/4" loss
VED 5-6 days/week, traction daily,
TRT 20 ml twice weekly, Cialas 3 mg - No Erectile Dysfunction - Doing Well!

ho2tcm

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Re: Xiaflex result
« Reply #7 on: August 26, 2016, 11:48:42 AM »

Keep us informed as I start round 2 in Dec. Did you see any improvement after each round?
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