My first round of Xiaflex

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Dros

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.

yyy

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

Dros

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...

yyy

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

healthadvocate

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!

Dros

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...

charlie44

Quote from: Dros 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...

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

Jonbinspain

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.


Dros

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.

OnTheBend

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!

QuackAttack

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.

OnTheBend

Quack Attack,

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

JayGould

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.

lessor

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

JayGould

Quote from: lessor on May 22, 2017, 11:39:46 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.

kingprof

Hi All, Just finished my first round of Xiaflex. First shot injection on Saturday, then next injection Monday followed by a modeling only session Tuesday (today as I write this). I'm really bruised and sore. Not crazy swollen, but definitely swollen. The worst part for me are the erections at night. I never realized how many nocturnal erections I had until this. Last night I woke up yelling it hurt so bad. Has anyone experienced this? I'm careful to never sleep on my stomach but just getting an erection at this point is really painful. At this point, it's really hard to sleep.
Anyway, I hope this ends up being worth it. Quite frankly, at this point I can't imagine you guys on here who have gone through 4 cycles of this. I scheduled the second cycle for 8 weeks from now, but that first one was unpleasant to say the least.

Did you guys all start at home modeling as soon as your cycle was over?
58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Three rounds of Xiaflex.

TDix

King, I was able to model a week after my second injection of the first round.  I did that for six weeks until my first shot of the second round.  Had some really bad things happen after that shot, so I am no longer doing Xiaflex.  Hoping everyone that is going through the rounds of injections see some success.  Just was not in the cards for me.  Still healing 6 weeks after my last shot
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TonySa

Wow, I didn't experience painful erection after injections and I went through four rounds.
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.

TDix

47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

curved

kingprof-  I wonder if you developed a hematoma during the night.  I went through 4 rounds (8 shots) of Xiaflex and developed 3 hematomas which were extremely painful.  They all seemed to develop 6 - 10 hours after receiving a shot. A very sharp pain that lasted for approx. 60 seconds.  Eventually the hematoma resolved itself (1-2 weeks) but I had to hold off on modeling. Given the side effects I wouldn't recommend Xiaflex unless one could not have intercourse.  
51 yrs old; diagnosed 3.5 yrs ago; 90 degree upward bend
But I had no ED
tried all pills, VED, traction, Xiaflex PRP, ESWT, H-100 & stem cells; IF diet. implant surgery with Dr. Eid 3/28/19
to correct deformity - 20 CM Titan 2cm RTE / 1 cm RTE

kingprof

Hi, I don't believe I developed a hematoma. My URO saw me the morning after that painful incident and I told him all about it. He didn't seem concerned. Last night (my first night post the in-office modeling session) was much better. The nocturnal erections were still a bit unpleasant but I didn't want to yell. Mostly it just woke me up until it went away. Now I'm just wondering when I should start modeling. Seems like it's a bit sore right now to imagine stretching.
58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Three rounds of Xiaflex.

Bubba dawg

Hemotomas are normal part of treatment. Usually resolve themselves. Erection cant be helped. Just no sex or masturbating for 2 weeks after each treatment. I went though 5 treatments before seeing really good results. Probably need another round. May not do that because I can have sex if the woman helps some. So dont expect miracles after a few rounds. Everybody is different though
5 Rounds of Xiaflex. Good results.

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kingprof

Wow, five rounds. All the respect in the world to you for doing that. I'm almost three weeks after my first round. Bruising all gone now. Started masturbating but haven't tried sex yet. Doesn't seem like the first round made much difference at all in curve unfortunately. I was hoping for at least a little improvement so I can work up the courage for another round. I've been religious about the stretching and bending that the xiaflex materials say. It's more than a bit discouraging to think about having to go through that 4-5 times.
58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Three rounds of Xiaflex.

Bubba dawg

Thanks king prof! Just take it one Ijection at a time. Try not to look too far ahead. My doctor told me I wouldn't see much improvement until round 3. Then after 3 he said I should see a lot of improvement in round 4. I still wasnt satisfied so it went to 5. But as the plaque and calcium softened 5 wasnt as bad. Ya xiaflex is no quick fix for many. Softening and molding. Softening and molding. Still not perfect. The head tip runs on the uterus at a angle. But I can have sex. Like I said in another post I am wary about pushing my luck for a 6th. But really it is not all that risky with an experienced doctor. Xiaflex has to use every disclaimer to cya. I wish you luck on your treatments. Just hang in there and dont give up
5 Rounds of Xiaflex. Good results.

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I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

Bubba dawg

Ya know the doctor did not tell me in the beginning that it may take 4 or 5 or  6 rounds. I guess he didnt want to scare me off. He just took it one round at a time.  I was having a lot of anxiety like most people do. Disappointed after round 1. Even more disappointed after round 2. Then he said 3! I was like wth!!!??? Lol
5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

tonyode

Quote from: Bubba dawg on November 26, 2018, 09:11:58 PM
Ya know the doctor did not tell me in the beginning that it may take 4 or 5 or  6 rounds. I guess he didnt want to scare me off. He just took it one round at a time.  I was having a lot of anxiety like most people do. Disappointed after round 1. Even more disappointed after round 2. Then he said 3! I was like wth!!!??? Lol

From what I know, there is a series of 8 total shots that are initially approved by insurances. As you know, they go in sets of 2. From what I can tell reading many of these posts, sounds like the doctors just see how things go as they go along with the series of shots. Or the patient can obviously determine when to stop. I would think after so many shots, if there is no improvement, the Dr. may even suggest they are not working. But all doctors have their own theories  they go by I am sure.  
Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

kingprof

My doctor was pretty good about setting expectations up front. He seems to have a pretty good handle on how many of his patients went 1,2,3,4 rounds before discontinuing for whatever reason,  e.g. satisfaction with the results, opting for surgery, etc. Today I am three weeks out from the first go around and like I would guess everyone in our boat, you don't look forward to going through it again, so you hope you're one of the exceptional cases that obtains results early in the process.
58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Three rounds of Xiaflex.