Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

Pages: [1]   Go Down

Author Topic: xiaflex did not work at all  (Read 4100 times)

0 Members and 1 Guest are viewing this topic.

David melton

  • PDS Newbie
  • *
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 2
xiaflex did not work at all
« on: November 20, 2014, 01:14:34 PM »

I have gone thru three rounds of ziaflex injections.  ZERO improvement. Curvature is still at 90 degrees.  I have canceled the last treatment. I had moderate pain with injections but very little afterwards. Lots of swelling and dark bruising.   U should ask Dr. For success record with xiaflex I think its VERY over rated.

Logged

NeoV

  • Major Contributor
  • ****
  • Country: jp
  • Offline Offline
  • Gender: Male
  • Posts: 2175
    • Neoman
Re: xiaflex did not work at all
« Reply #1 on: November 20, 2014, 03:41:22 PM »

That's no surprise to me whatsoever.

Did you follow the manual stretching guidelines? Xiaflex was first approved for Dupuytren's and then for Peyronie's. My father tried it on his hand and it didn't help in the end. Some guys have had good successes with it here for Peyronies Disease but others none. Sorry to hear that and hope other therapies help you. Don't give up.

skunkworks

  • Global Moderator
  • ****
  • Country: au
  • Offline Offline
  • Gender: Male
  • Posts: 1611
Re: xiaflex did not work at all
« Reply #2 on: November 20, 2014, 06:17:48 PM »

Logged
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

ThisWontWork

  • Voting Member
  • **
  • Country: se
  • Offline Offline
  • Gender: Male
  • Posts: 54
Re: xiaflex did not work at all
« Reply #3 on: November 20, 2014, 06:23:46 PM »

You should have tried the search function on this board.
Search for "Xiaflex" and  by user "ThisWontWork" and you will have all answers you need!
Logged
Pentox, CoQ-10, L-Arginine, VED, some Chinese herbs

RoyHobbs

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 169
Re: xiaflex did not work at all
« Reply #4 on: November 20, 2014, 06:54:08 PM »

Xiaflex doesn't have a 100% success rate. So just as Pentox, VED, traction, etc. work for some, for others they will not. But we have to throw everything but the kitchen sink at this terrible, terrible disease. For those who can work out the insurance and overall finances of xiaflex they should give it a go.
Logged

ThisWontWork

  • Voting Member
  • **
  • Country: se
  • Offline Offline
  • Gender: Male
  • Posts: 54
Re: xiaflex did not work at all
« Reply #5 on: November 20, 2014, 07:10:35 PM »

Xiaflex is as good as placebo. Will you pay $28.000 for placebo? Go ahead it´s your choice and your money.
Xiaflex is nothing but a fraud. Auxilium should be prosecuted for this swindle.
Logged
Pentox, CoQ-10, L-Arginine, VED, some Chinese herbs

skunkworks

  • Global Moderator
  • ****
  • Country: au
  • Offline Offline
  • Gender: Male
  • Posts: 1611
Re: xiaflex did not work at all
« Reply #6 on: November 20, 2014, 07:35:13 PM »

Some guys in the above thread have had great success. I find that quite an odd mentality, 'if it didn't work for me it cannot have worked for anyone'.
Logged
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

RoyHobbs

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 169
Re: xiaflex did not work at all
« Reply #7 on: November 20, 2014, 08:08:03 PM »

And I didn't mention it before because I didn't want to rub salt in your wound. But...

After one round, I went from an upward dorsal curve of 79 degrees to 54 degrees: 25 degree reduction.

After second round, the curve reduced to 45 degrees: 10 degree reduction.

I've seen a 43% reduction after two rounds. 3rd round is complete and I'll measure in three weeks, right before round four.

It's not a fraud. It just doesn't work for everyone.
Logged

skunkworks

  • Global Moderator
  • ****
  • Country: au
  • Offline Offline
  • Gender: Male
  • Posts: 1611
Re: xiaflex did not work at all
« Reply #8 on: November 20, 2014, 08:32:24 PM »

Did you or your doctor do 'modeling' of the plaques after the injections?
Logged
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

RoyHobbs

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 169
Re: xiaflex did not work at all
« Reply #9 on: November 20, 2014, 08:55:47 PM »

Absolutely. And in round 3 I was told to go ahead and do stretching the same day as the injection instead of waiting until the day after injection 2. They're finding that modeling is most effective in the first 36 hours after injection. But 3 daily stretches are also important as the plaque has been weakened and the continuing stretching will do additional breaking down. I've also done as much traction as possible. I did it the day after the first injection of round 3. I do it for an hour or two a day, averaging 4-5 days a week. I wasn't able to do it much at all though after round 2.

Logged

Ive

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 71
Re: xiaflex did not work at all
« Reply #10 on: November 29, 2014, 07:06:38 AM »

As a man currently undergoing Xiaflex treatment I abhor the negative comments expressed by ThisWontWork on this and other threads.

In fact, if Auxilium were to see them, they would almost certainly be successful in a libel case.

What concerns me most is that anybody contemplating this treatment may be deterred by his comments.

Of course, like anything else, it is a matter for every individual to assess the cost against the chance that it might not have the outcome you are looking for.

But to say Xiaflex is a fraud and the placebo is just as good is simply not true and believe me I have seen the figures and talked with others similarly receiving the injections which completely negate ThisWontWork's opinion.

I have a feeling, and this is a view I have seen expressed by others on this forum, that in the early stages of it's use it's success, or not, may be more down to the consultant's technique (which is improving all the time) rather than the drug itself.

This may be something that ThisWontWork may wish to consider carefully before jumping to the wrong conclusions.
Logged

liber

  • Solid Contributor
  • ***
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 109
Re: xiaflex did not work at all
« Reply #11 on: November 29, 2014, 09:18:48 AM »

i have had xiaplex in three fingers due to dupytrens (a similar condition to peyronies) it is not a cure it allows the scar tissue to be broken. in many cases the problem returns (as my doctor said it would and it has). i suspect the same is true for peyronie's sufferers with a genetic predisposition to these type of conditions.
Logged

Mending the Bend

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 97
Re: xiaflex did not work at all
« Reply #12 on: November 29, 2014, 09:53:18 AM »

Xiaflex is certainly not a cure for Peyronie's Disease; it doesn't change the body's ability to heal wounds, nor does it prevent fibrosis. But it DOES work (for most people) as an extremely potent remedy for certain symptoms, like deformity, which can create serious sexual and psychological problems.

For those with Peyronies Disease from an identifiable injury which is unlikely to recur, Xiaflex might end up resolving the issue once and for all.

Xiaflex doesn't appear to actually remove plaques; it simply remodels them. The can get softer and stretchier, allowing curve deformities to partially (or almost fully) resolve. I still have plaques in my penis, as we all do. And I was told by my doctor that they'll probably always be there. As long as they don't cause significant curvature or Erectile Dysfunction, I'm ok with that.
Logged
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
21 Replies
6893 Views
Last post February 09, 2014, 01:13:34 AM
by pvpey
19 Replies
5707 Views
Last post May 01, 2015, 04:52:49 AM
by MikeSmith0
1 Replies
1218 Views
Last post August 22, 2018, 10:51:37 PM
by JohnR