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Author Topic: Xiaflex in the UK  (Read 4248 times)

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Cosmos

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Xiaflex in the UK
« on: January 06, 2016, 05:30:28 PM »

Hi Everyone!

Does anyone know if a Xiaflex treatment is now available anywhere in the UK ?
I've been trying to find out from researching on the internet, but can't find a confirmation anywhere, except for clinical trials.

Thanks in advance!

Cosmos
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Jonbinspain

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Re: Xiaflex in the UK
« Reply #1 on: January 07, 2016, 11:46:04 AM »

Yes, The London Andrology Clinic certainly use it. There are probably many more.
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Cosmos

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Re: Xiaflex in the UK
« Reply #2 on: January 12, 2016, 03:35:16 PM »

Jonbinspain, thank you for your reply and clarification :)
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daved2

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Re: Xiaflex in the UK
« Reply #3 on: January 13, 2016, 11:48:11 PM »

Its called Xiapex in the UK
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50 years old, tried 5 rounds of Xiaflex, had Egydio grafting surgery, then Stage sutures for residual curve, then plication in 9/18, now finally I have a straight penis

Curve UK

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Re: Xiaflex in the UK
« Reply #4 on: March 17, 2016, 11:50:28 AM »

Mr C J Shukla, Spire Murrayfield, Edinburgh. Website also www.scottishandrologyservices.com

Very professional. Recommended.
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jasonuk

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Re: Xiaflex in the UK
« Reply #5 on: March 18, 2016, 07:43:58 PM »

hi guys - whats the approximate cost for xiapex in the UK?  Had Peyronies Disease for several years now, tried VED/Cialis but not had much effect so wondering whether to try this and also wondering if i can afford it!

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Gutted

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Re: Xiaflex in the UK
« Reply #6 on: March 18, 2016, 08:14:10 PM »

It is currently on trial for UK NHS approval (at UCLH). I wasn't particularly looking for it when I had my first Uro appt at UCLH but they said it was looking likely it could be approved by the NHS later in the year if I decided to go down that route (I think they were just informing me of all my options). They organised a follow-up appt for me in June when they said they would have firmer news about whether the treatment had been accepted by the NHS.

I'm not particularly interested in this treatment but they told me the private purchase cost of each single shot (without Surgeon / Consultant charges) was just over a £1000. So if a private clinic didn't mark up each injection and you estimate the consultants appt charge as £200, you could be looking at a min of £1200 per shot
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lukewill

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Re: Xiaflex in the UK
« Reply #7 on: May 05, 2016, 12:43:18 PM »

Hi gentlemen

Does anybody know of any updates as to whether xiapex in the uk may be given is the NHS. I read that NICE had completed their assessment. But have been unable to find out anything more ?
Best
T
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Gutted

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Re: Xiaflex in the UK
« Reply #8 on: May 05, 2016, 06:17:28 PM »

Earlier this year, UCLH told me they were doing the tests / trials to try and get Xiapex approved as an NHS treatment.

They told me they would update me in June (my follow up appointment)

I suggest you contact the dept of Urology/Andrology at UCLH to see if they will give you a position as of today

Cheers
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waitingforxiaflex

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Re: Xiaflex in the UK
« Reply #9 on: May 19, 2016, 02:44:25 PM »

I was one of the patients on the first PhIII trial run by St.Peters Andrology Center (Dr Ralph's clinic) on Harley Street in 2011.
I have just finished a 2yr follow up trial to check whether my gains had been retained etc.

I thought I would provide you guys with an update. I haven't been on this board in years which I guess is a good thing if you know what I mean  :)

I had a 30 degree curve that went down to around 13-15 degrees after 3 injection cycles - you can see my progress in 2011 here:
UK Xiaflex Trials - Peyronies Society Forums

So it's now 2016 and I am pleased to say that I have retained the gains I have made - around 15 degrees which doesn't give me much trouble either cosmetically or functionally. Stretched length is about the same too. So as you can imagine I am very happy with the results.

If you are looking for a surgeon to carry out this procedure I can recommend Amr Raheem.

He was the investigator who carried out my 2011 injections at St Peters Andrology center.

He also works at UCL.

As he was the investigator in the only UK trials he has a lot of experience with the injections.

Placement of the injection and subsequent modelling is everything with this medication and lack of experience could lead to inferior results.

Best of luck with your treatments guys.

Signing off (hopefully),

WFX
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lukewill

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Re: Xiaflex in the UK
« Reply #10 on: November 14, 2016, 03:52:58 PM »

HI there 'waitingforxialflex'

did mr raheem do the modelling for you or did you? and either way what roughly did he do?

also did you do one injection each round? or two with him?

Many thanks

L
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Ethan

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Re: Xiaflex in the UK
« Reply #11 on: June 29, 2022, 05:12:28 PM »

29 JUNE 2022 ::

I appreciate that this is an old thread, but I post this in the hope that someone might be able to jump on here.

I experienced Peyronies about 10 months ago. Now I am faced with looking for treatment in the UK, ideally on the NHS.

I have been referred to Prof David Ralph (UCHL), and I have already spoken with some people who work for him, and they have informed me that all the Xiaflex / Xiapex is out of stock in the UK, and there are supplies stuck over in the USA.  And that they only have Verapamil in the UK atm.

If this type of treatment (Xiapex) is the best (or v good) for peyronies ... does anyone here know how or where I could get my hands on some please?

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lukewill

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Re: Xiaflex in the UK
« Reply #12 on: July 03, 2022, 11:35:06 AM »

29 JUNE 2022 ::

I appreciate that this is an old thread, but I post this in the hope that someone might be able to jump on here.

I experienced Peyronies about 10 months ago. Now I am faced with looking for treatment in the UK, ideally on the NHS.

I have been referred to Prof David Ralph (UCHL), and I have already spoken with some people who work for him, and they have informed me that all the Xiaflex / Xiapex is out of stock in the UK, and there are supplies stuck over in the USA.  And that they only have Verapamil in the UK atm.

If this type of treatment (Xiapex) is the best (or v good) for peyronies ... does anyone here know how or where I could get my hands on some please?

Hi Ethan
Do your research incredibly carefully, however I would personally advise you to steer clear of Dr Ralph. He has caused further damage to many many patients. I believe he is a charlatan. Xiapex works in a small number of cases but for many has little effect and to some cause increased damage due to injecting with a needle into tissue which is already damaged. (You would not poke any other serious wound with a needle would you?) Many patients have written about how Dr Ralph simply through the initial inspection, causes irreparable further damage. He knows he is doing it too. He does it to further the damage that Peyronie does so that he can then push patients towards penile implant surgery, which is his speciality field, and which is where, surprise surprise, he makes most of his money. Honestly i know this sounds harsh or whatever, but don't say you were not warned. Good luck
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FlatteningTheCurve

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Re: Xiaflex in the UK
« Reply #13 on: July 03, 2022, 12:27:56 PM »

Hi Ethan,

I am undergoing Verapamil now at London Andrology as it seems to be the best option available in the UK atm although not through the NHS, only through private healthcare. I am definitely seeing improvements through this but it is a very different substance compared to Xiflex. Other than that, there is PRP but there is less research on how durable the results are and reviews seem to be mixed so far so I cannot say much about that.

I heard a few weeks ago that Xiaflex IS available in the UK again but it is really expensive. It is also a complex process where the docs can only order one injection at the time and given the financial status of the company manufacturing the substance, there is a lot of uncertainty about accessing enough for injections over all. Please see this thread for more details: https://www.peyroniesforum.net/index.php/topic,17910.0.html

Hope that helps!
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Early 30s, diagnosed with Peyronies in 2017 after trauma during sex. ca 15 degrees upward curvature. Restorex, VED, 5mg Cialis, Pentox, L-arginine, Coq10, Propolis, Vitamin E. Currently undergoing 8/12 rounds of Verapamil injections
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