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.