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Author Topic: Question on Collagenase  (Read 362 times)

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PeyroniKirai

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Question on Collagenase
« on: October 21, 2020, 03:58:26 AM »

I'm in Japan and posted my history previously on the Introduce Yourself board.  One year from discovering a dent and a bend, no significant worsening but no improvement.  Been taking Vitamin E orally (400 units/day) for nine months.  Japanese uro had me take Tranilast, a Japanese drug which has some results with certain types of keloids.  I took it for 3 months with no effect.  Now the uro says the best thing for me is collagenase injections, but collagenase is not available in Japan.
  Does anyone have any information on how I could purchase collagenase for personal use?  The uro says that if I can get it, he can do the injections. Of course I won't do anything illegal, but if there is a legal way to obtain the right kind of collagenase I would be interested in hearing from other PDS forum members.
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Age 60, Peyronie's history 10 months, left side hourglass, 20-degree bend to left, no Erectile Dysfunction

AnonDoc

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Re: Question on Collagenase
« Reply #1 on: October 28, 2020, 08:38:20 AM »

Japan pretty strict on importing right?

Might have to buy internationally in decently large quantities, looking into this myself.
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Started at around 16-17 w/ dumb exercises

Have tried all the supplements for 15+ years, things I’m a believer in:

-Dong in clean canteen w/ 104 degree water, intermittently Ice testes
-Transdermal collegenase
-Natto/serra
-Resveratrol makes mebig

jan.schaller1958

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Re: Question on Collagenase
« Reply #2 on: October 28, 2020, 12:43:41 PM »

Collagenese, which I believe is Xiaflex or similar, and is dangerous. If not injected properly it could go to your brain and kill you. Never self inject. Even in the US where Xiaflex is legal, a urologist has to inject it in select patients and needs a special license to do so.
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Hontas

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Re: Question on Collagenase
« Reply #3 on: October 29, 2020, 07:28:19 PM »

Collagenese, which I believe is Xiaflex or similar, and is dangerous. If not injected properly it could go to your brain and kill you. Never self inject. Even in the US where Xiaflex is legal, a urologist has to inject it in select patients and needs a special license to do so.
yes in US, urologists inject it into your healthy tissue so that your penis gets worse and they get more money. you are completely right. ;D
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TonySa

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Re: Question on Collagenase
« Reply #4 on: October 29, 2020, 08:59:39 PM »

Xiaflex is successful for some to some degree if not fully.
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

PeyroniKirai

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Re: Question on Collagenase
« Reply #5 on: November 09, 2020, 09:31:43 PM »

Thanks all for feedback.  Of course I would never consider injecting it myself.  The urologist seems to think he can dissolve some or all of the plaque by injecting near the site.  From a lot of the posts I see on this forum, I get the sense that there are a lot of quacks out there who push a very expensive course of injections without really knowing how to inject correctly, or more importantly, when to rule out collagenase as a therapy, as it's not for everyone - and they get away with it because we're desperate for a cure!
  I've had one operation from this uro for an unrelated issue and he did a very good job, so I have some trust for him.  However, injecting into the side of a penis without compromising the membrane and causing hematoma or fracture seems very fraught as a surgical tactic and almost hit-or-miss.  Those odds for me aren't attractive.
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Age 60, Peyronie's history 10 months, left side hourglass, 20-degree bend to left, no Erectile Dysfunction

jan.schaller1958

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Re: Question on Collagenase
« Reply #6 on: November 10, 2020, 04:16:07 PM »

That’s why you only let a Peyroines specialist, like Dr Lue, or,a,few others around do it. Sometimes the situation can change with time. When I first saw Dr. Lue in 2015 he said he couldn’t do Xiaflex because of the hourglassing. So, he recommended a surgery, which I declined. But, when I saw him in February of this year, he said he could now inject Xiaflex because the hourglassing disappeared, but he couldn’t do the surgery because of the unacceptable odds of Erectile Dysfunction at my age (62) of 40%. So, things can change.
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Shane43

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Re: Question on Collagenase
« Reply #7 on: November 10, 2020, 06:10:13 PM »

Jan - interesting that a famous highly-peyronie's-experienced urologist like Dr. Lui would say not to use Xiaflex in hourglass cases. My urologist is not a specialist in this area, but has seen over 100 patients with Peyronies Disease. He said there is no reason not to try Xiaflex on plaque causing hourglass indentation and that the only reason he knows of that people do not recommend it, is that the FDA approval study explicitly excluded hourglass indent patients, among some other conditions. So the FDA approval study simply did not include hourglass patients, so there is no data to support using Xiaflex...but also no data to say not to use it. After 3 series of Xiaflex injections, my dense plaque is only slightly smaller, but the hourglass is almost gone (from ~50% total indentation to maybe 10% now) and my penis stability at the base went from near zero to maybe 80% of what it used to be. Maybe I got lucky...
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59YO, hourglass indent and hinging near base, 30deg bend, 3cmx2cm hard (but not calcified) plaque at dorsal base. No Erectile Dysfunction. 3 rounds Xiaflex decreased indent/hinge/bend, waiting 3 mo to see if I can avoid 4th round fo Xiaflex (lots of bruising/pain)

jan.schaller1958

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Re: Question on Collagenase
« Reply #8 on: November 10, 2020, 07:53:35 PM »

Shane43

That is interesting. Let me a bit more nuanced about it. When I saw Dr Lue in 2015 I had hourglassing, which I thought was the most annoying thing about Peyroines (other than the shrinkage). I really didn’t have a sharp curve or upward bend like now. He said that inside the capora cavernosa (gosh I hate that word in English, and I never can spell it- I always think of the German Schwellkörper- such a better word-those Ballon like things that swell up and fill with blood during an erection) there are little strut-like structures, sort of like a bridge has, to help the penis keep its shape while flaccid. If you didn’t have those struts, while flaccid your penis would look like a deflated ballon. So, I assume the strut-like things help keep its shape while flaccid. Dr Lue said my plaque had developed around those struts and he said he couldn’t risk injecting Xiaflex in those areas because if he missed the plaque, the Xiaflex, being an enzyme, could get into the bloodstream, go to the brain and kill me. That’s why he offered me the surgery as an alternative. I assumed the plaque building up around those strut-like things caused the hourglassing. He said with a bend, the plaque is all concentrated in one area, causing the bend and you can easily and safely just inject right into it.

When I returned in February of this year, the hourglassing was gone and i just had about a 30 degree upward bend at the tip. Dr Lue did another ultrasound and said surgery was out, like I mentioned, but now he could use Xiaflex. So, I think hourglassing has to do with the location of the plaque, but that can shift and change with time. That might be why there is a general feeling that Xiaflex is not appropriate in cases of hourglassing. Every case is different, so I don’t want to generalize or make assumptions.
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Shane43

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Re: Question on Collagenase
« Reply #9 on: November 12, 2020, 10:26:52 AM »

Thanks for the clarification. My plaque was is large and right at the base of the penis and on top (dorsal). So very easy to find, very easy to inject without hitting unwanted area.
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59YO, hourglass indent and hinging near base, 30deg bend, 3cmx2cm hard (but not calcified) plaque at dorsal base. No Erectile Dysfunction. 3 rounds Xiaflex decreased indent/hinge/bend, waiting 3 mo to see if I can avoid 4th round fo Xiaflex (lots of bruising/pain)

jan.schaller1958

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Re: Question on Collagenase
« Reply #10 on: November 12, 2020, 11:11:42 PM »

Shane43: Yes, you Sound like the Perfect candidate for Xiaflex.
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