I have an appointment with a leading Xiaflex practioneer and expert in Peyronies in the UK on Thursday morning.
If anyone has any questions they would like me to ask him please post them here and I will add the replies to the thread.
Ask him what success rate he is seeing so far?...i.e....for example....50% of Xiaflex patients seeing results, etc? Thanks!
Please ask him if Xiaflex will work on patients who have had Peryonie's disease for several years with fibrosis or if it's only meant to treat fairly new patients. Also, if it does work, and the plaque say "disappears", is my healthy tissue gone? Will I still have a reduction in my size and hour glassing?
Thanks.
Will do for these two.
Any more for any more?
Leaving early tomorrow morning (Thursday 6th)
bummedout, I will ask him your question, but I think I read somewhere that Xiaflex is meant to just cause a split or crack in the plaque, not 'dissolve' all of it.
This then means the penis does not bend as much.
no bend for me, just everything else has gone wrong
either way, let me know
thanks
Just back and might have to do this in two parts as I have kids to pick up from school.
Please realise I am just passing information on. DO NOT SHOOT THE MESSENGER!!
bummedout with regard to your two questions, it is as I thought. Xiaflex or Collagenase as he kept sort of correcting me (which was interesting) does not dissolve all the plaque. It is injected to make a split in it thus facilitating bending.
He was adamant, I'm afraid, that Collagenase would be no good for people with calcified plaque as it would break the needles! However, he said apart from that people with the disease for years or just started are treatable.
He also said, which I have never heard, that C would not work for people with plaque at the base of the shaft but for people with it in the middle it was ideal.
I asked about success rates and he was very upbeat saying that in the UK they were very good (way above 50%) with some triallists getting rid of a bend completely. He said that he was frustrated that the real success of the drug was not revealed in the Phase III results and we should wait until the end of the year for the full picture.
I questioned him on the results of the placebo trials and here he was a little contradictory. Whilst he flatly disagreed that the placebo results were anything to do with a different doctor's technique in the stretching process, he did say he thought it would have been better if the placebo had not involved any stretching. He thinks that as a certain amount of Peyronies cases clear up of the own accord this would affect results like this.
He estimated Xiaflex would be available by the end of next year but definitely not on the NHS. He estimated treatment would cost in the region of £2,000!
He admitted that Xiaflex was not a miracle drug and that the only 100% way of getting rid of the plaque was by Nesbit operation.
I'm sure there was a lot more but I'm a bit 'jet-lagged' and will be back later.
Addendum:
bummedout I should correct something I wrote that he kept reffering to the affects of Collagenase as 're-modelling' the plaque.
It was me that referred to correcting the bend all the time - if this helps in your situation.
Just my opinion but - your "leading Xiaflex practioneer and expert in Peyronies in the UK" has got it all wrong.
What all of it?
Well that was a bit of a wasted journey then?
As were obviously all his qualifications in Urology?
And his salary?
He did talk a bit about Peyronies internet forums as well and certain people on them. But another time eh?
Just wanted to say thanks very much to Ive for the trouble you've gone to to make this information available to us.
I have to say however that I'm a bit worried by the talk of creating a split in the plaque. Is this a transverse or longitudinal split? I guess it has to be transverse or it wouldn't affect the bend, but I'd be worried it might create a weak point that would be liable to further damage. But I guess the guys developing the treatment would have thought of that, and we just have to trust them.
im confused why wouldnt the drug work well destroying plaque near the base of the penis?
did he saying anything about xiaflex relating to the nerves?
I believe you have the same uro as me as he was conducting the UK trial and has answeared many of my questions. I would say "this won't work" that he does know what he is talking about and probably knows more than the next 50 uros combined. My first uro told me my plaques would not shrink and there was nothing that could be done. My London uro prescribed pentox and showed me a VED device and 18 months later my plaques have gone. I received a letter saying my condition had been resolved. I'm basically cured. Could have been spontaneous resolution or the treatment. We will never know.
agent0 sorry not sure of the answers to either of your questions. Anyone else?
I can only presume that being near the base the plaque cannot be manipulated (stretched) as well once the collagenase has been applied but I may be totally wrong in this. It may just be a matter of application.
Worried Guy.
Yes it sounds like the same person. Really glad to hear of your 'success'. It sounds like I'm in safe hands (if you'll pardon the expression!!)
I am no huge supporter of Xiaflex. How could I be? I know no more than any other layman.
All I do know is the uro I am seeing has a brilliant track record of success - word of mouth and published material - he inspires and motivates me and everything he has so far suggested has either worked or had no bad effects. He has been brilliant with his attention to detail on a protocol for use of a VED, which I am just starting and his published VED trial results suggest a real chance of success. Coupled with your experience I am full of optimism. And then the possibilty of Xiaflex is just round the corner with the final results being extremely thoroughly scrutinised by independent experts before it is allowed on the market.
Worried Guy
Could you tell us if your plaques were calcified?
How many Pentox you have taken daily?
The VED was the one or the three cylinders? How long time daily you have used it?
You are continuing with the Pentox & VED?
Could you tell us the doctor name?
James
Hello all,
Have you all read the studies relating to how effective Carnitine's are? Check this out: Acetyl L-Carnitine Can Help Straighten Your Penis | Life Enhancement Products (http://www.life-enhancement.com/article.aspx?id=610)
There are more information on this exact study from the US National Library of Medicine found here: Acetyl-L-carnitine vs tamoxifen in the oral therapy ... [BJU Int. 2001] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/11446848)
Hope this helps.
BANNED: Peyronies Disease SUPPLEMENT RIPOFF SPAMMER
Was it Ralph or Christopher?
Neither.
Should xiaflex not be suitable for those with calcification, it's worth noting that pentox can reverse calcification in some cases.
My plaques were not calcified. I took pentox for around 12 months and used the VED for about 8 months. I saw Amr Mohammed and used the 1 piece VED. I don't want to get peoples hopes up because I may have just got lucky. Using pentox and a VED is a good place to start though.
As you are in exactly the same position as me worriedguy two quick questions if you don't mind:
1. When did you first realise that the VED was reducing the bend? I am presuming it didn't go overnight at some point.
2. Were you following the two ten minute sessions that our fellow expert recommends?
Hiya. First post and all. Been a lurker for a while and just started using the single cylinder VED Protocol and had 2 EWST with the final one in 2 weeks time. (No change in bend as of yet)
Worried Guy & Ive, as i live relatively close to London, could you PM the Urologists Details? I'd be ever so thankful.
Quote from: Simpa on September 19, 2012, 10:47:23 AM
Hiya. First post and all. Been a lurker for a while and just started using the single cylinder VED Protocol and had 2 EWST with the final one in 2 weeks time. (No change in bend as of yet)
Worried Guy & Ive, as i live relatively close to London, could you PM the Urologists Details? I'd be ever so thankful.
Hi there - have you noticed any improvements yet with EWST?