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Author Topic: xiaflex did not work  (Read 3634 times)

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Tdurden

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xiaflex did not work
« on: March 26, 2015, 01:07:47 PM »

I went through four cycles of xiaflex with little or no improvement. Here's my story in hopes it helps someone. My curve is about 45 dorsal and 20 to the right. I have had it since childhood (due to microtrauma I believe) but it became worse with age, especially post 40-50ish. I tried vitamin e, potabla, verapamil, all no results, so was optimistic when xiaflex was finally approved. I did notice increased girth and straightening with the first injection but it didn't last. In fact, it seems to improve slightly for a few days after each injection only to relapse. Due to a scheduling snafu my doctor did not do an ultrasound before starting treatment for objective comparison. Nevertheless, subjectively I would say after all four cycles I might have about a  10-15% increase, certainly not more than the 18% placebo figure. Nor did he do modeing after any of the injections, saying that it is no different than what I could do. I did the modeling faithfully throughout as instructed. The pain and swelling were typical of what is described elsewhere in this forum so I won't go into it, but had it worked that would've been a small price to pay. Insurance covered it for me, so I am lucky there. I am divorced and while this was not an issue in my marriage it is now, dating and the embarrasment and depression have me giving up. Would like to hear from anyone who proceeded to surgery after failed xiaflex treatment - as that appears the only option.     
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james1947

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Re: xiaflex did not work
« Reply #1 on: March 26, 2015, 05:42:31 PM »

Tdurden

Sorry to read that you had no positive outcome from Xiaflex.
In my opinion results may go down to the doctor capability and the protocol, but I am not a doctor and my knowledge go down to what I am learning on this forum.
I don't remember if someone on the forum made surgery after Xiaflex. Opposite, I mean Xiaflex after not successful surgery, have a few members that are thinking about.
Maybe before surgery, you should consult a Peyronies specialist regarding your possibilities.

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

Tdurden

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Re: xiaflex did not work
« Reply #2 on: March 26, 2015, 08:40:25 PM »

Thanks for the response. Based on my experience others shouldn't get their hopes up. I won't name names, but I don't think it was the doctor who was off in my case, because he was involved in the trials and has had close to 100 patients on this. My dilemma is whether to try more xiaflex (assuming insurance would cover it), surgery, or give up. Based on my experience and other threads here, xiaflex is a ymmv drug at best.
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BoatFool

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Re: xiaflex did not work
« Reply #3 on: March 26, 2015, 09:47:16 PM »

A couple of guys on this forum had good surgical results with Dr Morey: http://profiles.utsouthwestern.edu/profile/94915/allen-morey.html
James - Global Moderator:
I don't want to deleted your link, but to balance it I added our doctors list:
http://www.peyroniesforum.net/index.php/topic,4063.0.html

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skunkworks

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Re: xiaflex did not work
« Reply #4 on: March 27, 2015, 12:03:53 AM »

There have been a few reports of very good results, and a common theme has been the doctor doing quite aggressive modelling post injections.

michaelb

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Re: xiaflex did not work
« Reply #5 on: March 29, 2015, 01:07:28 AM »

I don't think anyone should be discouraged by these people saying Xiaflex doesn't work.  Xiaflex completely worked for me, and for lack of a better word my dick was TOTALLY f'd up.  I had multiple plaques causing it to bend in all different directions and extreme pain.  All bending is 100% gone as well as pain. The only thing left is about 1" loss in length which I am working on with penis master pro.  Any details I'd be glad to share, just ask any questions you'd like. Overall Xiaflex absolutely works and I am sure it has ALOT to do with who the doctor is.
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james1947

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Re: xiaflex did not work
« Reply #6 on: March 29, 2015, 05:24:26 AM »

michaelb

Xiaflex reports are mostly positive on the forum, I will say much better than the trials, but we should give the podium also to people that had no results or negative results.
Unfortunately for Tdurden, his results were negative. This forum is open for negative results also, not restricted for positive ones.

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

Old Man

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Re: xiaflex did not work
« Reply #7 on: March 29, 2015, 08:01:16 AM »

Caution note to all Peyronies Disease Members:

Just need to add my 2 cents into the mix about any and/or all Peyronies Disease/ED therapies. It has been shown throughout this forum that there is no 100% guarantee that any form of therapy will work for 100% of these cases.

One must devote their time and efforts toward some form of therapy. If the first one does not help with your symptoms, try another one. It may take quite a bit of time and research to find one that will get relief from your problem.

So, bottom line, keep a positive attitude, try different approaches with your therapy and DO NOT LET YOUR EMOTIONS RUN AWAY. Letting this happen will surely only lead to further personal problems! I know from my over 60 years of dealing with Peyronies Disease first and the ED as well after prostate surgery that emotions plays a greater part in recovery from any malady, especially those dealing with sexual health!!

Old Man
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Peyronies Disease @ age 24, Prostatectomy 1995. Started VED therapy 1995, Heart surgery 2004.

Ive

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Re: xiaflex did not work
« Reply #8 on: March 31, 2015, 05:20:08 AM »

Tdurden or anyone reading his thread of 26 March, are you actually saying, as it would appear in your comment below, that you gained a bigger curve by 10-15% after Xiaflex treatment or did you mean to write decrease rather than increase?

Nevertheless, subjectively I would say after all four cycles I might have about a  10-15% increase, certainly not more than the 18% placebo figure.
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Tdurden

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Re: xiaflex did not work
« Reply #9 on: April 01, 2015, 03:11:03 AM »

I meant to say decrease in the curve - point being litlle result. Puzzling aspect of it is that the largest plaque, where the injetions mostly were, is not at the area of curve. I have ultrasound scheduled so maybe that will reveal what is going on. Willing to try more cycles, if insurance covers it, but cannot help wondering if this is all for naught. Anyway, thanks for positive feedback and glad some others have had better experiences.
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skunkworks

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Re: xiaflex did not work
« Reply #10 on: April 01, 2015, 04:31:04 AM »

It might be an idea to consider a different doctor who will actually do modelling post injection if you do choose to have more cycles. If at all possible a doctor someone here has had positive results with.

ThisWontWork

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Re: xiaflex did not work
« Reply #11 on: April 01, 2015, 09:06:47 AM »

WHAT DID I TELL YOU! XIAFLEX IS A SCAM! I BEEN THROUGH ALL THIS SINCE I PARTICIPATED IN THE PHASE3 TRIAL.
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Pentox, CoQ-10, L-Arginine, VED, some Chinese herbs

james1947

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Re: xiaflex did not work
« Reply #12 on: April 01, 2015, 10:51:30 AM »

ThisWontWork

I understand your and other members anger that the Xiaflex didn't helped them, but before announce it as a scam, make a small work, a summary of the forum members with they results. It will take you maybe a week or so.
In my opinion, you will be surprised and not find support to your sentence:
XIAFLEX IS A SCAM!
I am sure also that if it was a scam, FDA were not approving it as Peyronies treatment.
By the way, (unfortunately) I don't have shares in the company that bought the Xiaflex from Auxillium.

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

batboy

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Re: xiaflex did not work
« Reply #13 on: April 06, 2015, 05:04:52 PM »

ThisWontWork

The Xiaflex scam worked for me and I am very happy with the results. I went from 45 to 50 degree bend to somewhere in the early twenties. I am not as straight as I would like, but certainly acceptable. I think the best results come from the best Doctors administering the shots. The best results I had were after the third round which I did very little modelling due to soreness. Perhaps you should look up the word scam  in the dictionary before posting such garbage...

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Ive

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Re: xiaflex did not work
« Reply #14 on: April 07, 2015, 10:29:13 AM »

Have to agree batboy.

I think james is probably right that results vary according to the skill of the doctor.

And second I think it is down to people's perception as to what has been a success and what not. Some people, like you, are accepting of some reduction while others expect a complete straightening which I think is the exception rather than the norm particularly in those with 'mature' Peyronies.

I am confident that Xiaflex will produce even better results with early sufferers whose plaque is softer and less well-formed.

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ThisWontWork

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Re: xiaflex did not work
« Reply #15 on: April 21, 2015, 06:10:52 AM »

ThisWontWork

I understand your and other members anger that the Xiaflex didn't helped them, but before announce it as a scam, make a small work, a summary of the forum members with they results. It will take you maybe a week or so.
In my opinion, you will be surprised and not find support to your sentence:
XIAFLEX IS A SCAM!
I am sure also that if it was a scam, FDA were not approving it as Peyronies treatment.
By the way, (unfortunately) I don't have shares in the company that bought the Xiaflex from Auxillium.

James

It´s all about PLACEBO. If you are a hard believer then anything will help you out. That´s the trues. A lot of people has gain benefit of the Xiaflex injection because they believe the stuff will help against peyronies.
If you pay $10.000 for placebo it´s a scam!
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Pentox, CoQ-10, L-Arginine, VED, some Chinese herbs

james1947

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Re: xiaflex did not work
« Reply #16 on: April 21, 2015, 06:41:11 AM »

ThisWontWork

My proposal is still standing:
Quote
make a small work, a summary of the forum members with they results.
Also I have asked for a volunteer to do that, but no members willing to do:
Volunteer for forum Xiaflex results compilation - Peyronies Society Forums
And also I have asked updates from forum members regarding Xiaflex success/failure, but until now, after 3 days we have just one:
FORUM XIAFLEX RESULTS - Peyronies Society Forums

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

Ive

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Re: xiaflex did not work
« Reply #17 on: April 22, 2015, 06:27:20 AM »

Three now james. 2-1 to the UK lol!

I have another set or results from another UK trialist if you want me to post them. I have his permission.
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james1947

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Re: xiaflex did not work
« Reply #18 on: April 22, 2015, 06:59:31 PM »

Ive

Yes, you can post your friend results. Write them with an other user name than yours to be clear that it not a double post.

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

MikeSmith0

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Re: xiaflex did not work
« Reply #19 on: May 01, 2015, 04:52:49 AM »

The main problem with xiaflex is that it is given as a 1-size-fits all injection.  Nearly every intralesional drug on the market has a dose that is tailored to a patient's needs (size of the plaque, in this case) - and the angle of injection, and how many needle passes - are also variable with most other drugs.  Not here. So what if someone has a thicker plaque or a plaque that is on a weird angle?  The vials only come in 1 dose.  The trial only allowed for 1 injection method. 

Also,  even if everything goes perfectly with the injection, the tunica has already been compromised by the fibrotic process - so the tissue isn't healthy in some men, even if the scar is dissolved.   Anyway, those are some of the reasons why it's not such a blockbuster drug with perfectly straightforward results.  There are some ideal patients for this and some bad patients for this - like plication vs. grafting vs. implant...some patients should do one and not the other.  No 1-size-fits-all approach there.
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