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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 in the UK  (Read 4692 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. Underwent 12 rounds of Verapamil injections 2021-22

Ethan

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Re: Xiaflex in the UK
« Reply #14 on: September 19, 2022, 06:47:15 PM »

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

Firstly, v sorry for the lateness of my reply.

My god, I am shocked to hear you say this. He seems to be the Top NHS Urology surgeon in the UK... or at least, he is a professor and with more papers published than the other NHS surgeons (I have read all their bios).

Re 'causing irreparable damage in the initial inspection', this sounds totally nuts. Why would he do this during a NHS consultation? Does the NHS pay surgeons 'per operation'?

I did notice how the 'implant' procedures seem to be his forte.
https://www.thelondonclinic.co.uk/experts/consultants/prof-david-ralph

Background / published papers:
https://www.uclh.nhs.uk/our-services/find-consultant/professor-david-ralph

Wait... I have just read the first 20 threads on Ralph in this forum. I see what you mean. This thread doesn't only suggest that he has a bad attitude, but he's also described as a 'butcher' by at least 2 guys:
https://www.peyroniesforum.net/index.php/topic,12280.msg133379.html#msg133379

... I can see beyond someone's bad bedside manner if the surgical results are consistently great ... but physical screwups are a line crosser!

Thank you
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Ethan

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Re: Xiaflex in the UK
« Reply #15 on: September 19, 2022, 06:52:23 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!

Thank you, and sorry for my late reply.

Q : How is Verapamil different to Xiapex? - Have you tried both?

Interesting your comments on platelet counts. I have recently had blood work in the UK, and my platelets are low.
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FlatteningTheCurve

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Re: Xiaflex in the UK
« Reply #16 on: September 22, 2022, 03:29:08 PM »

Hey,

I have not tried both. Xiaflex is too expensive in the UK at the moment (roughy £7,000 per session, at least 2-3 sessions is recommended).

Verapamil is a calcium channel blocker. It has been around for around 40 years and is used for different kinds of treatment. Xiaflex is an enzyme that dissolves collagen and has been around for just over 10 years.

My doc, who has treated patients with both Xiaflex and Verapamil, describes Xiaflex as more aggressive of the two while Verapamil is weaker. Thus, in his experience (just relaying what he told me) Xiaflex tends to render better results in terms of curvature reduction but Verapamil is also easier to control.

Another difference is that for Xiaflex you also receive fewer rounds of injection and fewer injections each round. For Verapamil, I got injected 13 times each session and had 12 sessions in total. This leads to quite a bit of swelling and bruising, which I am sure is the case for Xiaflex as well, just saying that the treatment and the effects might differ. I think I saw Dr Trost saying that he believes Verapamil is more risky since each injection constitutes a risk.

Then again, my doc likely recommends Verapamil because that is what is available, and Dr Trost is likely to recommend Xiaflex because that is his preferred form of treatment... Anyway, hope that answers your question.
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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. Underwent 12 rounds of Verapamil injections 2021-22

Ethan

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Re: Xiaflex in the UK
« Reply #17 on: October 29, 2022, 07:11:43 PM »

Hey,

I have not tried both. Xiaflex is too expensive in the UK at the moment (roughy £7,000 per session, at least 2-3 sessions is recommended).

Verapamil is a calcium channel blocker. It has been around for around 40 years and is used for different kinds of treatment. Xiaflex is an enzyme that dissolves collagen and has been around for just over 10 years.

My doc, who has treated patients with both Xiaflex and Verapamil, describes Xiaflex as more aggressive of the two while Verapamil is weaker. Thus, in his experience (just relaying what he told me) Xiaflex tends to render better results in terms of curvature reduction but Verapamil is also easier to control.

Another difference is that for Xiaflex you also receive fewer rounds of injection and fewer injections each round. For Verapamil, I got injected 13 times each session and had 12 sessions in total. This leads to quite a bit of swelling and bruising, which I am sure is the case for Xiaflex as well, just saying that the treatment and the effects might differ. I think I saw Dr Trost saying that he believes Verapamil is more risky since each injection constitutes a risk.

Then again, my doc likely recommends Verapamil because that is what is available, and Dr Trost is likely to recommend Xiaflex because that is his preferred form of treatment... Anyway, hope that answers your question.

Thank you.

Is this Trost?
https://auau.auanet.org/node/12944/bio/16991/view

And, who treated you at London Andrology?
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Ethan

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Re: Xiaflex in the UK
« Reply #18 on: October 29, 2022, 07:26:55 PM »

... I would personally advise you to steer clear of Dr Ralph ...

I am booked in to see Dr Ralph in December, at the UCLH on the NHS... I am now concerned that he might even damage me in the consultation. I don't want surgery, only injections. Please can you tell me who did the peyronies injections on you?

I am looking for a recommendation. I have read multiple threads on here now, but for the UK I still think this subject is unclear. If the big Professor is no good, and other doctors (like the one in Southampton) just refer people up to Ralph in the big smoke... then where to go from here  :-\
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FlatteningTheCurve

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Re: Xiaflex in the UK
« Reply #19 on: October 30, 2022, 12:18:18 PM »

Hey Ethan,

Apologies for not responding earlier.

Yes, the Dr in the link you shared is indeed Dr Landon Trost, the one I was referring to.

At London Andrology I first consulted Suks Minhas and then Dr Tet Yap. If I was you and you are interested in only injections I would request Dr Yap to assess your condition straight away, that would mena you only pay for one initial consultation.

I have not met Dr Ralph but I have seen a lot of negative reviews of him on the forum. I can only recommend London Andrology in the UK as they are the only ones I have seen, they are really straight forward with what their treatments can and cannot do in your specific case.

I also think that the risk of being damanged during an assessment is quite small. For mine, I got an injection to stimulate an erection, then they did an ultrasound of the plaque and measured the curvature. It is not comfortable but I doubt it is dangerous.

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. Underwent 12 rounds of Verapamil injections 2021-22

Ethan

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Re: Xiaflex in the UK
« Reply #20 on: October 30, 2022, 06:12:12 PM »

... At London Andrology I first consulted Suks Minhas and then Dr Tet Yap. If I was you and you are interested in only injections I would request Dr Yap to assess your condition straight away, that would mena you only pay for one initial consultation. ...

Hey, thank you so much.

Looks like this is him: https://londonandrology.com/tet-yap/

I will contact them and ask for prices. I have noted your comments that Xiaflex / Xiapex would cost £7k if it were even available, which I understand it isn't. So, looks like Verapamil is the viable option atm.

The ultrasound sounds great. I doubt I'd get this on the NHS... or at least , not straight off the bat anyway.
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