Xiaflex - Recommended Dr.

[BentKnob]

I'm from the UK and travel to America on holiday ocassionally.

I am looking to get an Xiaflex injection each time I go to correct a 20-30° curvature.

Can anyone recommend me a doctor and where they are based and how much they cost?

[Mikel7]

My first and foremost choice would be Dr Trost and he is based in Utah. He has developed his own methodology in using Xiaflex with great results. I am sure you could do a tele visit first with him.

[randyzon]

Dr Blick in Phoenix.

[BentKnob]

Dr Blick in Phoenix.

How was your experience?

Did curvature improve?

What was the cost of your treatment?

[randyzon]

MY curvature (70+ degrees) has improved greatly with the first split treatment. The bend was too great for intercourse and now the bend is reduced enough for comfortable intercourse. I did the hand modeling (skip 24 hours then 3 times a day for the next 48 hours 1 minute each time) with a variation since my hand pull is nothing like the Restorex. I pulled and then ran a finger under the penis to make an opposite bend to the Peyronie's. This seemed to work.

Just like the trimix for the ultrasound I bruised. With the Xiaflex I developed hematoma's enough for small blood pooling. The Dr obviously uses no blocking meds. Needle is not painful. Slow injection as he pulls out the syringe and injects the Xiaflex does cause some pain.

I have Blue Cross Blue Shield. My office visits are $40 copay. Each Xiaflex prescription is $65. After finishing the first series the Dr joked he had just injected $4,000 worth of meds.

[Pfract]

For how long are you staying in USA when you go there? There's several good doctors that you can go to, but you should factor in the possibility of you having the need for medical treatment if things go south while you are there.

[BentKnob]

It will most likely be 2 weeks.

I very much doubt I could have any treatment in the USA as you would need American health insurance?

Otherwise the cost of treatment for Xiaflex would be extortionate.

I hear they will offer it in Europe under the name Xiapex.

There is a way they can order it in.

I look into all options.

[randyzon]

You will need more time for a treatment schedule. For me 1st visit was interview and examination. 2nd visit 3 months later for trimix and ultrasound delay because schedule was full. 3rd visit month later to get Xiaflex prescription. 4th visit another month later for first round of injections.

Then Dr says insurance requires a exam at 5 weeks prior to getting more Xiaflex. Then resume at 6 weeks. In my situation I can order the Xiaflex to be delivered to the Drs office. Insurance did not say anything about a separate exam.

[Shane43]

I would suggest that a 20-30 degree curvature is not enough to warrant Xiaflex, and in fact is not recommended by the manufacturer and there are no data to support its efficacy at such a low curvature. This does not mean it can't help, but all Xiaflex studies were performed on men with much higher curvature. I had a 60-70 degree curvature and Xiaflex seemed to work after three rounds of injections, but only 1-2 years after they concluded. I saw Dr. Levine in Chicago and used my local urologist for the injections. I suggest you make an appointment with Dr. Trost, Dr. Levine, or several others listed on this forum that are world renown experts. Get there advice. In the US, insurance will not pay for Xiaflex unless you have at least 60 degree curvature - which of course can be "fudged" by a urologist to get you in that range. But you are outside US insurance...you do realize how expensive this is without insurance? I would try other therapies before spending $10.000+ on a therapy designed for men much worse than you. Just my opinion...

[BentKnob]

Thank you everyone.

This is all very helpful in learning about how Xiaflex is administered.

It sounds like Xiaflex is far too expensive without insurance and it's a complicated procedure given the aftercare.

It seems like there is a lack of qualified doctors who know what they are doing to make sure treatment is done correctly.

It seems to be a successful treatment when combined with Restorex.

We have to hope that more doctors train in the field and more research is done to make it a common used treatment and widely used all over the world.

[BentKnob]

After further research I have found that a few urologists in the UK are offering injections with the active ingredient collagenase for an affordable price.

It appears that there are now generic forms on the market without having to pay Xiaflex/Xiapex the extortionate costs they were asking for.

I am considering this and would like to hear other people's experience in both Europe and the UK.

[richestorags]

After doing a little digging, generic "collagenase" may be "collagenase clostridium histolyticum", the active ingredient in Xiaflex. I am not qualified to comment on that, however, if genuine Xiaflex is available then see if you can get it. It's important to note that the injections are only part of a cure. Aggressive stretching and counterbending in the days immediately after injection is what truly brings a decrease in curvature.

I sound like a broken record, however........I was at 70 degrees upward curve. Ultrasound showed plaque but no calcifications. Dr. Trost injected me with Xiaflex March 16, 2023 and March 17, 2023. six hours after the March 17 injections, I put on the RestoreX, cranked it to the max in both length and counterbending sessions and continued to do so for several days afterwards. The first RestoreX session was shocking as my unit immediately saw length and counterbending milestones that were unthinkable pre-injection. It was like stretching out a rubber band. Dr. Trost has patients wrap their units with gauze and medical tape post-injection to prevent the blowups that are seen in so many Xaiaflex failures. Dr. Trost was very blunt that his program is quasi military and that patients who adhere to his protocols are the ones who see the best results. Well, one set of injections got me from 70 degrees upward curve to less than 20 degrees which is considered normal. It was not easy and it was not fun. Would I do it again? Oh hell yes.

RestoreX is available in the UK via iMEDiCare. It is pricey, however, Dr. Trost said that my aggressive use of Restorex immediately after injections were what brought about a "one and done" cure. Good luck and please don't hesitate to reach out with any questions.

EDIT: your signature indicates that you already have a RestoreX. That's great.


 

[BentKnob]

richestorags:

Yes it's the active ingredient in Xiaflex they are providing in London here in the UK.

Did you use RestoreX immediately after your Xiaflex injections?

Were you not worried about damaging yourself by aggressively stretching so soon afterwards?

Did you stretch and counterbend twice a day for 30 minutes after injections?

Was your penis painful, sore, swollen and bruised after each injection?

Thanks for sharing your experience. I find it very helpful.

[richestorags]

Hello: Thanks for your note and in answer to your questions:

Dr. Trost injected Xiaflex 16 March 2023 and 17 March 2023 at 7:30 AM.
Timeline: Immediately after the injections 17/03/2023, he pulled on my unit and got three small "pops" which was thethe plaque breaking. He instructed me to use the Restorex starting at 2:00 PM 17 March 2023 and my unit immediately stretched out like a rubber band. It was nuts. I used the RestoreX for 60 minutes a day in the two weeks following the injections (30 minutes of length and 30 minutes of counterbending). There was an adverse event which brings us to the next topic....
Wrapping: Dr. Trost instructs patients to wrap their units first with gauze tape and then stretchy medical tape on top of the gauze. This prevents blowups as seen in Xiaflex horror stories. His protocol is to wrap for five days after the injections which I did and there was no pain or swelling whatsoever using the RestoreX. I stopped wrapping on day 6, however, that night I had a "pleasant" dream, popped a boner and my unit blew out. It hurt like hell. I used ice, Tylenol, Motrin and even went so far as to apply Anbesol, an oral anesthetic used for toothache. RestoreX use stopped for two days and then resumed. It was bleeping excruciating to clamp down on the head. I continued wrapping for another two weeks as a precaution and continued with RestoreX use. This is just me, however, if I could do it over I would have kept wrapping for two weeks straight and avoided the blowout. Dr. Trost said there is no risk in extended wrapping aside from possible chafing. As before, there was no pain whatsoever using RestoreX pre-blowout
Bruising: there was a purple discoloration on the head of my unit which took about three weeks to fully go away. It was skin discoloration only and was not the nasty purple blisters seen in Xiaflex horror photos.

In summary:
1. I went from 70 degrees upward curve to around 15 degrees with one set of injections
2. Wrap your unit to keep it from blowing out, including during restorex use
3. Dr. Trost instructed me to use the restorex barely six hours after the second set of injections. It is his opinion that my early and aggressive use of Restorex post-injection were the key factor in a "one and done" cure

Dr. Trost has a number of excellent videos on YouTube which are worth watching. Good luck and keep us posted.
 

[BentKnob]

This is all very helpful.

I'll be having treatment with Dr Amr Raheem for collagenase injections. So I'm not entirely sure what his protocol is.

I'm aware of Dr Landon Trost being the leading doctor in peyronies disease and the creator of RestoreX.

I have a consultation this Tuesday with Dr Amr Raheem so will ask him about the aftercare after collagenase injections and report back here.

I will keep everyone updated and hopefully those in the UK will have an insight into treatment here regarding injections.

[GreatDane]

BentKnob, it's very interesting that you are going to have collagenase injections with Dr Amr Raheem. I am thinking about doing the same. It seems that he is one of the very few doctors in Europe who offer collagenase injections. Have you started the injections and if so how is it going so far?

[BentKnob]

There is another clinic in London offering Xiaflex at a huge price.

It's called London Andrology and the injections are performed by Mr Tet Yap.

The price tag is around £40,000 which includes 3 rounds of Xiaflex injections at a cost of £11,832.28 per injection.

Insurance is needed through Bupa or AXA.

Dr Amr Raheem operates from the International Andrology London offering a generic form of Xiaflex with the active ingredient Collagenase.

He charges £1,900 per injection so a course of 3 collagenase injections comes to £5,950.

I had a consultation at a cost of £250 where I asked him so many questions as for a patient I have educated myself on the condition with help from these forums.

I am booked in for my first round of collagenase injections in 2 weeks time.

[GreatDane]

BentKnob, thanks for your quick reply. Yes, £1,900 seems far more reasonable than £11,832 per injection, which is a such a rip-off. Good luck with your collagenase injections in two weeks' time.