are you guys optimistic about xiaflex? how many of you think it will work?
there's a lot of negative post about xiaflex. i wanna know how many of you will think it will work.
my life is depending on it. my urologist and i both think scar tissue is putting pressure on nerves which is causing my penis to go numb, so i really need this to work.
iv lost about 80% of feeling to my penis. hopefully this will work.
Agent, I dont like to be bad news, but xiaflex is a therapy with poor results and dangerous adverse effects.
Check your PM, I send you a link.
It does not look good with regards to Xiaflex. BTW Agent0 I too suffer from peyronies and penile numbness and ED which my urologist believes are interrelated as most other causes of penile numbness such as pudendal nerve entrapment, back problems, hormonal irregularities, diabetes, prostate and bladder problems and medications have been ruled out. Also the penile numbness began right when the peyronies symptoms appeared...put 2 and 2 together. My urologist referred me to Dr. Ethan Grober whom I am seeing in July for peyronies treatment. I will let you know how it goes since we have similar symptoms.
For the past month I have been taking Ubiquinol, Acetyl-L-Carnitine, Vitamin E and L-Arginine...noticeable improvement as far as erectile function and small improvement in penile sensation, deformity seems unchanged, plaques seem mostly the same although on at the bottom of my penis might have gotten slightly smaller.
Agent0,
Are you asking about the effectiveness of Xiaflex, or the possibility of Xiaflex getting approval to treat Peyronies Disease?
Attached is a link I posted back in November. It was my last visit with Dr. Levine and his thoughts regarding Xiaflex and its use. Bottom line is it is likely to help improve a certain percentage of men, but it isn't going to be the cure all "silver bullet".
Agent0
I know also people with very good results, bellow a quote from a PM to me:
QuoteI did see the reaction pictures and yes that is bad. I am not a doctor so I can be sure of what caused the problem. My thinking is that this reaction might be like a person being allergic to a bee sting ....
I do believe in the merits of the drug, as it did a world of good for me. I am sure I received more improvement that most. I am the same now as the outcome of the trial. I do credit my improvement to my doctor as he is one of the best.
Don't lose hope, just keep in mind the results are very individual and doctor connected.
James
No I am not optimistic at all. It may help with the scar, but it could also further negatively impact the nerve tissue and other healthy tissue. There are other less aggressive treatments you need to try first. Xiaflex may turn out to be more aggressive than surgery since administration can not be limited to scar tissue alone. The pictures posted on the other website make this clear and show some of the unintended consequences.
Well there are consequences from ANY good procedure administered poorly. Xiaflex and Varapamil treatments are almost identical and clearly are less invasive than surgery.
This is why we ALWAYS suggest going to a highly skilled doctor for Peyronies treatment.
Yes I agree with your comment about doctors, however with such a new drug, no one is experienced administering it. They will learn through their bad outcomes what causes the least harm.
Verapamil is a vasodilator and shares little in common with Xiaflex.
I consider any method that damages tissue highly invasive. With surgery at least you have the benefit of knowing within a fairly tight margin of error what tissue will be excised, and what will be left alone. This is not true with injections.
I hope I am wrong and Xiaflex is a tremendous success, but I definitely will not consider it until administration has been refined and it has proven the test of time.
The doctor I go to for my prostate said one of his patients was in the Xiaflex trial and reported back to him that he had an 80% improvement (not sure what that means but it sounds good).
The doctor I am now going to for my Peyronies Disease was part of the clinical trial and injected 8 of his patients with Xiaflex. He said that 2 of the 8 did very well and the others did not respond. He also said that he thought only 2 of the 8 would respond and felt the other 6 were not good candidates for the procedure. He said I am a good candidate for it. I should have asked more questions and will when I see him again in 5 months, including any negative responses to the injections. I got the impression that the 6 who did not respond were probably calcified but I am not certain.
He is very optimistic about Xiaflex and plans on contacting all his Peyronies Disease patients when it becomes available and hold a seminar to inform them and encourage treatment. He made me feel very optimistic about it.
In the interim, he put me on Pentox, L-Arginine, daily Cialis and traction for 6 months.
That is good it helped 25% of his patients. However the trial excluded quite a few men, including those with calcification. So if 6 of the 8 were not good candidates it would be good to know why ? maybe the scarring was just too severe.
I am not a Xiaflex enthusiast (my plaques are calcified) but if will help 25% of the man treated, Xiaflex will be in the class of his own. Verapamil injections helps much less (forum opinion).
About Xiaflex (or other) injections being invasive as surgery (or more)? I had a few surgeries and many injections, how can put them on the same scale? The pain, the recovery, VERY different.
James
I have hourglassing and loss of length with very little curvature and I don't imagine Xiaflex will do anything at all for that. I'm hanging my hopes on stem cell research and regrowing penile tissue. Might take awhile though.
-Skjald
I personally don't see why Xiaflex would not have a positive effect on hourglassing if it does work for deviation. Both deformities are caused by scar tissue and both could be somewhat reduced if the scar tissue is partly eliminated or softened.
I guess the reason hourglass patients were excluded from the trial is because they focused on angulation reduction to show the product's effectiveness.
I suppose that even if the product does indeed eliminate or reduce scar tissue, it still doesn't mean the deviation/hourglassing will be reduced, at least significantly. I guess one layer of scar tissue is enough to cause deformity, even if you remove some of the layers. Think of a door with 10 locks: even if you remove 9 locks, the door will remain closed.
Anyway I'm not even close to be a doctor, so this is not of much value. But in conclusion, I don t think Xiaflex will be very effective. Minor to moderate improvements at best, with possible dangerous adverse effects.
Maybe when/if FDA will approve Xiaflex they will give us more details why this treatment will or will not be approved and shade more light on the subject.
Until then, we all (including myself) are speculating based on not enough information. ;)
James
So I had an appointment with Dr. Metro in the Philadelphia area this week who was involved in Xiaflex trials. I got a good vibe from him and he had mentioned that in the trials there were only two fractures that resulted from modeling done too drastically with a full erection. Supposedly you are only supposed to model the penis with a semi. Other than that there is usually bruising for 48 hours. He said that the Xiaflex "breaks up the plaque" and that it is possible to inject into the "center" of the penis or the area in between the urethra and two corpus cavernosums (which is where I have scarring). Having heard all of this I am still skeptical, but I guess we'll all find out more by the end of summer. In the mean time he put me back on trental, along with some L-Arginine that is supposed to help the trental work.
Quote from: bummedout on June 01, 2013, 01:07:11 PMHe said that the Xiaflex "breaks up the plaque" and that it is possible to inject into the "center" of the penis or the area in between the urethra and two corpus cavernosums (which is where I have scarring).
Bummedout, he said you can inject xiaflex in the septum? I was told that doing this this was a definite "no" with that drug. Many Peyronies Disease patients have scarring there, so I thought this was one big drawback to the drug. It seems like it would be very dangerous if any of the enzyme got into the corporal bodies. Since the enzyme dissolves collagen, the corporal bodies would be very badly damaged it got in there.
Bummedout, Dr. Metro in Norristown PA is my Peyronies Disease urologist as well. He told me that he was part of the Xiaflex trials and had eight patients in the trial. 2 out of the 8 had good results, the 2 which he expected. I had so many other questions for him that I neglected to ask him why the 6 who did not get good results were not really good candidates for Xiaflex as he had expected.
Do you know why he did not expect those 6 to be good candidates? I am optimistic about Xiaflex and he said he thought I am a good candidate for it.
Mike,
I was curious about that too, but he said that it was possible. I am still skeptical though. I'll ask again when I go back next month.
IhatePD,
He only told me about the two fractures, but again, when I go back next month I'll ask him some follow up questions.