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My UK TRIAL Xiapex result

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Voglin

Hi all.

At the suggestion of james I am posting the final results of my Collagenase (Xiaflex) trial I have just finished with Andrology in London.

Whilst I will be totally objective on this posting, I am happy to answer any questions anyone might have on the trial and, if my opinion is asked for, will make it clear this is what it is.

Furthermore, I would be really grateful for other people's opinions on the results. It won't affect me at all to hear people's views and in fact would love to hear them either way.

The trial consisted of four cycles over approximately a five month period, each with two injections of Collagenase spaced about three days apart. After each there was a period of two weeks doing nothing and then after that we were checked by the Urologist before commencing two weeks of VED operation (two daily sessions of five expansions each for 30 seconds each separated by a 5 second gap) conducted at home.

My initial curvature was 60 degrees upwards

After Cycle 1 injections and VED a 10 degree reduction - 50 degrees

After Cycle 2 injections and VED a 5 degree reduction - 45 degrees

After Cycle 3 injections and VED a 10 degree reduction - 35 degrees

After Cycle 4 injections and VED no change - 35 degrees

Looking forward to hearing from people.

nemo

That sounds like a textbook Xiaflex success story.  Congratulations on your improvement! 

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

james1947

Voglin

Thank you for posting.
The improvement you are stating are 30% and I would like to ask a few questions:
Did the doctor made modeling or you have done modeling yourself?
How you are rating the pain on the scale of 0/10?
If you lost girth/length to Peyronies, you got something back?
How are the erection compared to the erections before the Xiaflex?
Can you have penetrative satisfactory sex for you and your partner?
Sorry so many questions, but your answer will help others to decide what to do. :)

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Voglin

Hi james

The improvement you are stating are 30% and I would like to ask a few questions:
I make the improvement 38%


Did the doctor made modeling or you have done modeling yourself?
I had no modelling at all, neither from the doctor or done by myself. There were two groups of four. One group only VED, the other received small amount of modelling from doctor. When I asked yesterday I was told there was no significant difference in results between the two groups.
How you are rating the pain on the scale of 0/10?
I presume you mean pain from the injections? Not too bad. A bit like a bee sting that lasted for about 5-10 seconds. Then no pain afterwards.
If you lost girth/length to Peyronies, you got something back?
I presume so although we were never given figures on either. I know the doctor was measuring the length each time though.


How are the erection compared to the erections before the Xiaflex?
No difference. I have been lucky and have had no problems with erections at any stage.

Can you have penetrative satisfactory sex for you and your partner?
Yes. We were OK before and just had to adapt positions a bit. Now that is much easier.

Anything else please ask.

james1947

Thanks for the answers Voglin
Hope many others will post they results :)

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

MiniMe

Hi Voglin,

First of all, congrats on your results...seems to me that if you decide to continue the injections it might even get better.
I have a couple of questions:
* Did you experience any pain while having an erection before the Xiapex injection? If the answer is yes, did the treatment have any positive effect pain wise?
* What other positive effects can you contribute to this treatment except the decreased curve? (maybe better elasticity, more rigidity,  no dents etc.)
* Do you have any negative experience while doing this treatment? Will you recommend it to others?

Thank you very much for your answers

Voglin

Thank you MiniMe

Interesting point you raise about continuing treatment. I raised this with my doctor and the nurse. They said they would think this over but initially their opinion was that perhaps the plaque had stretched as much as it would go (particularly as there was no change after Cycle 4) and therefore further Collagenase would have no effect. They also wondered whether the body had raised antibodies now to combat further beneficial effects of the drug. And, of course, I would have to pay for it!!

No is the answer to pain having an erection before Xiapex. I have never had pains on getting an erection apart from when the Peyronies was in its active phase some six years ago.

Interesting question about other benefits. I would say rigidity is the same. I have never had that trouble either before or after so have been very lucky in that respect. I would say I do get more elasticity now but it is such a difficult thing to measure. One thing I have noticed is that the bend does not come into play until much later on in the erection. Therefore, one advantage is that when it comes to making love, I can have quite a straight entry if I don't get too aroused too quickly. Of course, this doesn't work all the time! I never had any dents.

The pain of the injections was nothing to what I had imagined. Yes there was bruising and my penis went a very strange beetroot red after the injections but only for a period of about three to four days. Psychologically it was tough. It focused my mind on the defect a lot and I hit a lot of brick walls during the process. At times I had to force myself to continue the VED work when I didn't want to and 5-10 degrees isn't that obvious to look at so there are periods when you think nothing is happening at all.

Would I recommend it to others? That is such a difficult one because each of us is different and, remember, I wasn't paying for the treatment, so in a way it was a case of everything to gain and nothing to lose. There are quite a few ifs and buts still about Xiapex. Some people will do very well, some moderately and some get no improvement at all. I agree with james that the skill of the doctor is very important and I don't think anyone has worked out the very best protocol yet, hence, I suppose, why the company is still conducting trials.

Having said all that, I do think Xiapex works but it is a gamble. I think anyone would be very foolish to expect it to reduce the curvature completely so if they are hoping for that think again. If you are paying for it, then I would take the attitude that the best you should hope for is a result similar to mine (there were many others on the trial with similar % reductions). You should also remember that it may produce no result at all (again unlikely - no one achieved nothing on our trial - but it is possible and has happened).

The other aspect to consider when making a choice is the length of time you have had the disease. My doctor is convinced that Xiapex will be more effective and work quicker (possibly less cycles needed) if the disease is in the active phase or shortly afterwards. He describes people like me after six years as a 'mature' Peyronies Disease sufferer and is convinced the plaque is harder and more difficult to stretch.

Hope this is helpful and answers your questions.

MiniMe

Thank you for your profound answer Voglin it helps a lot.

I'm thinking of getting this treatment in the UK since I don't know when Xiapex will appear in my country and as I understand, it's much cheaper than in the US.

Regarding the continuation of your treatment, after I read almost every post about Xiaflex/Xiapex on this great forum...I've noticed that usually you achieve the best results or any kind of results (to those who were less fortunate and the first 4 injections didn't do much) after the 5 -6th injection.
So maybe you should point it out to your doctor and ask his opinion about it, or even better, if he can check out the statistics so far and call some doctors that had the greatest progress with their patients and ask them what they did differently (or maybe I'm asking for too much :)).

Thanks again for sharing your thoughts and experience, the more information the better  :)

Voglin

Thanks MiniMe.

With regard to continued treatment and number of injections, don't forget I had a total of eight injections (two each cycle).

My doctor said that the most dramatic changes were after Cycle 3 which would be injections 5 and 6 so may coincide exactly with what you are saying.

Do you not think?

MiniMe

Sorry for the confusion, I meant after the 4th cycle...So it would be the 10th injection (cycle 5) or the 12th (cycle 6) [While applying stretching for at least an hour a day since the beginning of the treatment - maybe combining both VED and stretching will get better results?].
Although, If I remember correctly,  there weren't many people who continued with cycles 5-6 because it was too expensive.