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Author Topic: Xiaflex Available Outside of the US Again?  (Read 389 times)

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FlatteningTheCurve

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Xiaflex Available Outside of the US Again?
« on: May 25, 2022, 01:04:36 PM »

I am not whether anyone else has noticed this but the company that manufactures Xiaflex, Endo International, seems to be going through some serious financial difficulties. They are currently overseeing their strategy and what they can do to improve their business model.

Then today, I spoke to my doctor who is currently treating me in London. He mentioned that he was at some big urology conference in the US last week and met with representatives from Endo International. They apparently mentioned that they are currently looking into making/have already made Xiaflex available in Australia. He asked them if they are also looking into making it available elsewhere as well but they did not provide a straight-forward answer.

I just wanted to check if anyone else has heard anything about this?
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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

Bill2020

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Re: Xiaflex Available Outside of the US Again?
« Reply #1 on: May 25, 2022, 06:14:49 PM »

I spoke with my Urologist about the availability of Xiaflex in Australia just 4 weeks ago.

He is (by far) Australia's most experienced urologist when it comes to injection therapies for Peyronies.

He was unaware of any imminent change that would make Xiaflex available in Australia.

He did mention that there were som urologists (himself included) who were campaigning to reintroduce it to the Australian market.

But he was not very hopeful that they would have any success.

Having said that, it does not mean that it is not about to happen (I am merely relaying the conversation I had with my urologist).
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*45 y.o.
*25° lateral curve
*Lost about 2cm in length and some girth
*2 sessions of PRP - made things slightly worse
*Currently taking Tamoxifen(low dose), L-Carnitine, COQ10, Vitamin E, Cialis (daily 5mg) and TRT

FlatteningTheCurve

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Re: Xiaflex Available Outside of the US Again?
« Reply #2 on: May 26, 2022, 03:06:03 AM »

Hey,

That is really helpful, just the kind of response I was looking for, thanks!

I did feel like it was perhaps too good to be true, or just something that is at a very early stage now and might take months to materialise. I know there are many doctors from several countries campaigning but, like your doctor, all that I have spoken to have not been hopeful of any change in the near future.

Either way, keep us posted if you hear something new!
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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

FlatteningTheCurve

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Re: Xiaflex Available Outside of the US Again?
« Reply #3 on: June 10, 2022, 04:35:20 PM »

Update: I spoke to my Dr today and he mentioned that Xiaflex is available in the UK again and that they are providing it at London Andrology.

Good news: It is available in the UK again!

Bad news: Before it was withdrawn the price was £900 per injection, making it around £3000 for a standard treatment of three injections. Now, the price per injection is £7000! If I understood it correctly, that is similar to the price in the US(?) He said that while Xiaflex is available, the price means that they cannot really make it widely available. It will also not be possible to cover it with insurance in the UK so it has to be self-funded.

In addition, because of the uncertainties with Endo International, it can be the case that the company folds midway through someone's treatment. At the moment, they have to order the substance for each injection separately, meaning that if the company would go bankrupt then a patient might risk having only been able to have one injection and not being able to have the other two.

Still, this is at least some good news since it was not available two weeks or so ago. Let us see if this changes moving forward.
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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

Pfract

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Re: Xiaflex Available Outside of the US Again?
« Reply #4 on: June 10, 2022, 04:42:09 PM »

That is some crazy stuff, but nonetheless there is an option out there for those who are planning on having it.

FlatteningTheCurve

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Re: Xiaflex Available Outside of the US Again?
« Reply #5 on: July 11, 2022, 02:44:33 PM »

Just a minor update - I checked with my old urologist based at Karolinska in Stockholm, Sweden. He said they are not accessing Xiaflex there and he was not aware of it becoming available anytime soon. So that is less good news for our members in Sweden and presumably those in other EU countries.
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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
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