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Author Topic: My first round of Xiaflex  (Read 1323 times)

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Dros

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My first round of Xiaflex
« on: May 27, 2016, 09:17:11 AM »

After four sessions of PRP that did not produce any results (see Dr VIRAG PRP and Hyaluronic acid treatment - Peyronies Society Forums), I finally had my first round of Xiaflex this week.

As I have written before, my condition is quite strange, because I have no plaque and only limited fibrosis (2.8mm, only the tunica), yet a curve (to the left) of more than 70 degrees (started out with 45, but it got worse even though I took Pentox, Arginine, Carnitine, Q10 and used both traction and a VED). So as a last resort before surgery, I opted for Xiaflex.

Because I have no palpable plaque, my doctor in Switzerland, unfortunately, not only flat out refused to treat me (this I can at least understand) but he also refused to prescribe me the Xiaflex, even though Dr. Virag (who is very highly regarded) in Paris told me that, with ultrasound guided injections, it doesn't really matter whether one is able to feel the plaque. So, because my insurance only covers the treatment if a Swiss doctor would have prescribed it, I had to pay the whole treatment (drug, travel to Paris, treatment with Dr. Virag and Dr. Sussman) myself. On top of that I had to get the drug in Switzerland because Xiaflex is not yet available in France. This, in itself, was quite the hassle (you need a prescription to get the drug). Anyway, I finally got everthing I needed and took the necessary time of to go to Paris for three days (having been to Paris so many times, I didn't even care about the trip and spent the whole time in a hotel when not at the doctors office).

The treatment itself was not that bad (after multiple sessions of PRP that I have already done with Dr. Virag, I was very well aware of what was coming), but boy oh boy, my penis looks like crap. The first injection wasn't that bad but the second injection (two days later) left my whole dick swollen, black, blue and purple. The color really looks catastrophic, but after reading through this forum I'm pretty confident that I do not have to worry (I don't really have a doctor to go to anyway, Paris is 6 hours away). I can't tell you guys anything else, as my second shot was just yesterday and I haven't done any modeling so far. But let's hope I finally see some results, I think I already lost more than 5000€ because of this disease...

A couple questions to those who have experienced the same bruising: 1) did you do anything specific against the swelling and the discoloration (like creams, cooling or warming stuff...) and 2) did you model while your dick was still in such a rough shape? I want to maximize my results, so I'd like to start with the modeling as soon as possible.
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yyy

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Re: My first round of Xiaflex
« Reply #1 on: May 27, 2016, 03:38:20 PM »

For the swelling the best thing was to wrap the penis after the procedure. Moreover he had to perform modelling immediately after the injections and you start asap to do it because the drug most likely works only in the first 24-48 hours.
Is the pain painful if you do modeling? how much did you pay per injection? did he use an ultrasound during the procedure? It is fundamental in my opinion. Good luck
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Dros

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Re: My first round of Xiaflex
« Reply #2 on: May 29, 2016, 03:26:08 AM »

Hey yyy

Yes, Dr Virag and Dr Sussman always use ultrasound to check where they inject. This is why I did it in Paris, because they are the only doctors I know who do that :-)

I started modeling the day after my second injection and mostly, everything is ok, no more pain. I did rupture some blood vessels (I think) however while stretching, resulting in a big lump, making my penis even worse to look at ;-)

I paid €1000 per vial of Xiaflex (€2000 in total) and €700 for the two days of treatment with Dr. Virag. In total (including travel and accomodation), the trip cost me a little more than €3000...
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yyy

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Re: My first round of Xiaflex
« Reply #3 on: May 31, 2016, 04:38:43 PM »

ok but now your penis has healed properly or not? does it look completely normal now? keep us updated
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healthadvocate

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Re: My first round of Xiaflex
« Reply #4 on: June 02, 2016, 03:18:25 PM »

My Dr. said no modeling and no sex for two weeks. Bad looking penis goes away on its own (a week)  but maybe some color change (darkening) stays around. I had great results-good luck!
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Dros

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Re: My first round of Xiaflex
« Reply #5 on: June 09, 2016, 07:40:09 AM »

Well, I'm afraid to say that the Xiaflex had no positive effect at all. On the contrary, I fear that (possibly because of the aggressive modeling) I have picked up an additional cord of plaque... I have decided that I will stop all treatments for the time being, wait until I am definitely in the chronic phase, and then opt for surgery... It really sucks, but I feel that this is the only sensible path in my case. I really wanted my condition to improve as quickly as possible, as I cannot even contemplate having sex at the moment, but I have come to the conclusion that this disease will not be fixed in the coming months...

To be honest, I feel that, as much as I want to believe that these other treatments work, surgery is still the most promising treatment for us... and it seems that, with the right surgeon, it is also not that dangerous... I spent almost as much money as surgery costs, without any results...
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charlie44

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Re: My first round of Xiaflex
« Reply #6 on: June 22, 2016, 02:04:04 PM »

Well, I'm afraid to say that the Xiaflex had no positive effect at all. On the contrary, I fear that (possibly because of the aggressive modeling) I have picked up an additional cord of plaque... I have decided that I will stop all treatments for the time being, wait until I am definitely in the chronic phase, and then opt for surgery... It really sucks, but I feel that this is the only sensible path in my case. I really wanted my condition to improve as quickly as possible, as I cannot even contemplate having sex at the moment, but I have come to the conclusion that this disease will not be fixed in the coming months...

To be honest, I feel that, as much as I want to believe that these other treatments work, surgery is still the most promising treatment for us... and it seems that, with the right surgeon, it is also not that dangerous... I spent almost as much money as surgery costs, without any results...

What kind of surgery will you be having?....Graft, Implant?....
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Jonbinspain

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Re: My first round of Xiaflex
« Reply #7 on: June 23, 2016, 01:49:51 AM »

Dros;

I'm really sorry to hear of your problems.

Before I elected for surgery with Dr Kuehhas, he had told me that with Xiaflex there are no guarantees. Given that the cost ( I would have needed 4 rounds of treatment) was very little short of the cost of surgery, I decided that as firstly there were no guarantees, and secondly, even if it did work the best I could hope for was a 30% improvement, that the risk of surgery was the better option.

Almost seven months after surgery I now have a straight penis, from an almost 90 degree curve at its worst point. I'm down very slightly on length, but girth has returned and may even have increased with all the traction I have done. I may well regain the .5-.75 inch of length that I estimate that I'm down.

So, don't give up. Surgery, done by a surgeon who knows what he's doing is as risk free as it can be. Follow exactly what you're told and you should be fine.

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Dros

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Re: My first round of Xiaflex
« Reply #8 on: June 23, 2016, 08:28:10 AM »

Thanks Jon, I agree that it seems like surgery, correctly done, is quite safe, and also the best bet for complete curvature correction. Let's hope that I will be able to afford it...

Charlie, I'm pretty sure that I want to do the procedure with Dr. Kuehhas (Egydio Technique). If I'd do it here in Switzerland most of the costs would be covered, but regular grafting procedures seem to be quite dangerous... and I'd rather spend 10k for a procedure with almost guaranteed success than spendkng very little for a procedure with a high probability of ED and complications... but I will try to discuss this with my doctor in Switzerland, before I make a final decision.
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OnTheBend

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Re: My first round of Xiaflex
« Reply #9 on: May 07, 2017, 06:01:10 PM »

Good luck with your recovery.

I just had my 1st round of Xiaflex shots late last week and I return to the doc early next week for the 1st round of modeling.

After the 1st shot my penis was purple close to the base.  After the 2nd shot it really looked bad; purple and swollen everywhere except the head.  After a couple days it's starting to look a bit better.

I am doing a few things to help out my penis.  I have switched from boxers to boxer briefs so I don't have as much movement and chafing and I am also throwing in some talc power which has a cooling effect.

I have started doing the modeling and I have been doing the stretching in my hot tub.  The heat feels good and stimulates blood flow.

All the best!
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QuackAttack

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Re: My first round of Xiaflex
« Reply #10 on: May 07, 2017, 09:40:51 PM »

On,

Ask your URO to send you home with a roll of Coflex to keep your penis wrapped for several days after each injection. This will help with swelling. Something I found out is using the Neo Gold magnet from Lyon Legacy kept all swelling and most of the bruising away after my last cycle. I will be wrapping a magnet in the Coflex for all future cycles. I go for an eval at the end of May and then start the 5th cycle in June.
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OnTheBend

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Re: My first round of Xiaflex
« Reply #11 on: May 08, 2017, 12:01:27 AM »

Quack Attack,

Thanks for the tip on the magnet.  I'll check that out.
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JayGould

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Re: My first round of Xiaflex
« Reply #12 on: May 22, 2017, 11:28:47 PM »

Have you thought of having an implant? I don't think other surgeries work, or at least they are very risky. An implant you could have installed even before you are in the chronic phase, which probably could help you regain some size as well.
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lessor

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Re: My first round of Xiaflex
« Reply #13 on: May 22, 2017, 11:39:46 PM »

Can an implant be installed before the chronic phase? That's true?
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james1947

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Re: My first round of Xiaflex
« Reply #14 on: May 23, 2017, 07:43:43 AM »

Checkout:
FrankTalk
This is the place to ask this question :)

James
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JayGould

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Re: My first round of Xiaflex
« Reply #15 on: May 23, 2017, 07:09:33 PM »

Can an implant be installed before the chronic phase? That's true?

Yeah, it can. And it's better than waiting because the plague will be softer and can possibly be stretched out by the implant.
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