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Author Topic: Xiaflex side effect photos from a few trial patients  (Read 45541 times)

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MikeSmith0

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Xiaflex side effect photos from a few trial patients
« on: May 21, 2013, 05:48:38 AM »

A few patients in the trial who I have been in contact with for years (since the trial began) put a blog together about their experiences in this trial. They don't want to be named (you'll see why in the photos), and some do not post here - but I thought this would be useful information (and they are fine with it being posted here).  One of them has a separate blog, but he hasn't posted it here.  I don't think Auxilium is going to be showing pictures like this any time soon, but I think it's valuable to be informed about these experiences (and fortunately this blog is member run, not "sponsored").  These were not the worst cases either (there were 2-3 penile fractures as well).   

Warning - graphic and not safe for work:
Auxilium Collagenase (Xiaflex) Trial Experiences and Side Effects

They are not actively trying to stop the approval of the drug - but they just want patients to know what could happen.  The side effects will probably be told to you in some manner before you get the injection, though a picture is different than reading a giant list.  Also, these effects lasted for a very long time (contrary to trial sites saying it wouldn't exceed 2 weeks).  There's a lot of text on here too - and some may not agree with what is written, but it is just a collection of opinions from doctors and biochemists as you will see. 
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Old Man

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Re: Xiaflex side effect photos from a few trial patients
« Reply #1 on: May 21, 2013, 10:31:18 AM »

Mike:

I took a good long hard look at the photos and description of them in the link you posted. Man, what a mess that occurred for these guys. IMHO, it would have to be a very desperate last chance for me to have my most prized posssession, my penis, injected with a solution that would produce these kind of results.

As I recall from my membership on a previous forum by the Bio Specifics company, they were not able to produce this medication to a viable solution.

Anyway, the above is just my 2 cents on the subject and long considered opinion about this answer to our Peyronies Disease symptoms.

Old Man
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Age 91. Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995. Heart surgery 2004 with three bypasses/three stents. Three stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries in the last 10 years.

MikeSmith0

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Re: Xiaflex side effect photos from a few trial patients
« Reply #2 on: May 21, 2013, 10:53:05 AM »

Thanks Old Man.  I don't know what to think about this drug anymore..2+ years ago I thought it was a miracle cure.  I hoped these results were due to bad technique, and one of the guys suspects that the injection was put above the plaque - not in the plaque (and you can easily miss by a millimeter).  However, a top doctor who was also in the trial said he had a patient who had similar side effects & it was injected properly.  The other pic - the blood all pooled at the bottom of the penis & clotted - and the needle certainly didn't go in the bottom (nobody with a plaque on the bottom could enroll).  It just was a very strange reaction that took a long time to get 100%  better (a year or so).  The guy with the blisters can still see where the blisters were over a year later. 

The reasons for problems are unknown - but their best guesses were explained on the site - and I think one of the main issues is the dosage / size thing that nobody ever wants to discuss.  Everyone's plaques are different sizes & anatomy is not the same for all men - but they don't alter the dose.  It makes no sense to me.

I never entirely understood what Bio Specifics and Auxilium related to each other.  So, Bio Specifics failed their first try and Auxilium took it from where they left off?
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RoyHobbs

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Re: Xiaflex side effect photos from a few trial patients
« Reply #3 on: May 21, 2013, 12:22:53 PM »

What a pisser.

I may forward this on to Dr. Lue and get his thoughts on it. Either way it certainly makes one want to wait a year or so for injections. Let's see some results before embarking on this path.
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MikeSmith0

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Re: Xiaflex side effect photos from a few trial patients
« Reply #4 on: May 21, 2013, 02:12:38 PM »

Roy - Yeah, I agree.  Btw, if Lue was a study doctor, he may be bound by confidentiality not to speak about the results. Also, most doctors will minimize this and say it is rare.  However, if you look at the prescribing information for Xiaflex dupuytren's contracture (link below), 98% had at least one side effect - 70% had bruising and/or swelling (4% placebo).  Blistering is not reported, possibly because skin on the hand is very different than the penis.  Hemorrhage was reported at 38% (3% placebo).

https://hcp.xiaflex.com/Documents/PL-0110-001.c_Prescribing_Information.pdf

IMO, It's a little more disturbing when it's on your penis & can get this bad vs. just on your finger...and it's essentially unavoidable (the dosage is the same in Peyronies Disease as it was in DC).  Whether it will look this bad for everyone is probably not the case... but reading the phrase "chance of blistering or hematoma" and seeing it are 2 different things...hence, they wanted to make their pics public.
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RoyHobbs

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Re: Xiaflex side effect photos from a few trial patients
« Reply #5 on: May 21, 2013, 02:30:19 PM »

I asked Lue if he was involved and he said no. He was asked to participate but Auxillium wanted UCSF to cover insurance for the patients that might enroll in the trial at the school. And the University declined. So hopefully he will be open to giving his thoughts on the information in the blog. He's very good about answering questions via email.
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MikeSmith0

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Re: Xiaflex side effect photos from a few trial patients
« Reply #6 on: May 21, 2013, 02:36:32 PM »

Oh yeah that will be interesting then.  I cannot believe Auxilium wasn't insuring people themselves.  That's a little shocking considering how bad things went for some patients (penile fractures in a few cases).  They expected the physician's office / institution to insure people for THEIR trial and THEIR profit?  Wow.

I'll be curious what he says.  The information there was from people who understand the molecule even better than most doctors, btw... particularly the info about the molecule size and lack of selectivity.  I really never knew that until I spoke with those people...who were told this by a biochemist.
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james1947

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Re: Xiaflex side effect photos from a few trial patients
« Reply #7 on: May 21, 2013, 05:54:00 PM »

MikeSmith0

The blog pictures are shocking >:(
I am not a candidate for Xiaflex (calcified plaques and also have no $40,000 to pay) and very happy for that ;D
Very importand that Xiaflex candidates will see those pictures.
Again, just asking: Maybe is connected to the doctor capability to inject & stretch and not to the meds used?
Thanks for the link.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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funnyfarm

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Re: Xiaflex side effect photos from a few trial patients
« Reply #8 on: May 21, 2013, 06:22:35 PM »

I already decided against it earlier but that is the most disturbing information I have seen since joining this forum and re-affirms my decision.

I am  now very worried about all the guys waiting to get Xiaflex.  This thread is a must read !

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lgrace

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Re: Xiaflex side effect photos from a few trial patients
« Reply #9 on: May 21, 2013, 06:48:47 PM »

Ouch. That looks awful. But again, if you read the information on that blogpage, you don't understand why Xiaflex doesn't do that to everyone.

It seems a lot more penises will have to take a beating before we find out what Xiaflex is really worth.
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MikeSmith0

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Re: Xiaflex side effect photos from a few trial patients
« Reply #10 on: May 22, 2013, 12:38:06 AM »

My guess is it's related to:

The plaque density (xiaflex is likely to spread outside out of thin plaques or miss them)
Doctor's technique (if the plaque is missed, blood vessles will dissolved, causing blistering)
Penile/plaque size (guys w/ small plaques and smaller penises are getting "overdosed" - because they do not alter the dose based on size of plaque).

98% of dupuytren's patients who received the drug had 1 side effect, 70% had bruising and swelling (vs 3-5% placebo) so it is almost everyone, realistically.  The extent of it is just variable.  This guy at the top had it bad, but he didn't have a penile fracture at lest.  A few others in the trial did - and that's way worse. 
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socal

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Re: Xiaflex side effect photos from a few trial patients
« Reply #11 on: May 31, 2013, 08:07:27 PM »

Please provide a link to view Xiaflex. On Sept. 6th the FDA will provide the final ruling and I am considering this option if I do not have improvement with oral meds.
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MikeSmith0

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Re: Xiaflex side effect photos from a few trial patients
« Reply #12 on: June 04, 2013, 01:46:55 AM »

Socal - here it is.  It was at the bottom of the page (if your board is set up in the default setting with the oldest posts on the bottom).

Warning - graphic and not safe for work:
Auxilium Collagenase (Xiaflex) Trial Experiences and Side Effects
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chico

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Re: Xiaflex side effect photos from a few trial patients
« Reply #13 on: July 10, 2013, 01:31:47 PM »

Heck, I think I'd rather have the surgery than to go through this half whit butchery. Trial and error in this area? Nahh... The concept seems like it does have potential.. it's powerful.. too powerful and not nearly enough precision in delivery to the affected area.

The pictures are discouraging and alarming, plus the lack of support for these brave, trusting and most likely desperate men is shameful.

I'm thinking I'd just about be ready to just use leeches on my areas... along w/ Cialis, an EDpump, and possible traction regiment before I'd consider this 'treatment' as it is at this stage. Just my take..
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jackp

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Xiaflex
« Reply #14 on: July 18, 2013, 11:12:04 PM »

I have been off this forum for a long time. The accident where I was hit walking in a parking lot did a severe back injury, which I am still dealing with, and heart problems. I happy to say the heart problems have gotten better.

Now to the subject:
The reps with Auxilium have been in contact with me for several weeks. Waiting for FDA approval of Xiaflex they wanted to do a filmed interview with me and my wife. My doctors at Vanderbilt told them I would be a good person to tell his peyronies story.

The purpose of the video is to make men with peyronies and the doctors that treat it aware of what peyronies can and will do to men. In talking with the rep I learned many things. Some of which I can tell here.

The doctors have to be educated the limitations of Xiaflex and its proper administration.
Xiaflex is not for men with a curve over about 50 degrees or has any Erectile Dysfunction. He must be able to maintain a rigid erection o his own.
It only worked for about 50% of the men in the study.
The average curve reduction is 25 degrees.
The most common complication is a hematoma, resulting from improper diagnosis and administration.


Why did I tell them my story? We have all been general practice urologist that did little to help us or tried things they did not have the skills to do. In my case after 15 years+- of peyronies and it effects on me a local general practice urologist tried to do an implant for me. He punctured my urethra and aborted. He wanted to try again in 3-6 month with a special instrument he did not have at the time. I thought NO not again in a MILLION YEARS. That started my quest to find a doctor that was qualified. I was finally referred to Dr. Milam at Vanderbilt and he gave me back my sex life.  The complete story is on my blog and on this forum called "One Mans Story".

IMHO Xiaflex is not a silver bullet. It will only help a small percentage of men with peyronies. As more men are aware that at the onset of peyronies Xiaflex may help them it may be the right option for them. But that needs to be made by a qualified doctor!!!! General practice urologist need a lot of training before starting the treatment. He also must know when to back off and refere to a competent peyronies specialist. 

Jack P
http://jackp-penileimplant.blogspot.com
 
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funnyfarm

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Re: Xiaflex side effect photos from a few trial patients
« Reply #15 on: July 18, 2013, 11:29:46 PM »

Glad to hear you are doing well with the implant, thats great. I have to say I am puzzled by your post.  Why are doing a promotional video for Auxilium ?  Are they offering you free treatment or compensation ?  Were you a Xiaflex patient ? 
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MikeSmith0

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Re: Xiaflex side effect photos from a few trial patients
« Reply #16 on: July 19, 2013, 02:01:36 AM »

Auxilium is now promoting Peyronie's disease awareness.  They built a site for it called askaboutthecurve.  JackP may end up on that site with his video...I'd be surprised if this were on TV.

It sounds like they are trying to build a bigger market (ala restless legs syndrome)...but it's strange that someone with an implant is going to be raising awareness for their cause.  Several patients in the trial ended up getting surgery (like implants - but some plication or grafting) after the drug failed in the trial.

JackP has always been a very knowledgeable and helpful member of this board for many years, so he is a good person to talk about his experience Peyronies - but here it's just a little odd because he had an implant...and so I wonder - will this be disclosed in the video?  Or, will it be a pure Peyronies Disease video?
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Old Man

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Re: Xiaflex side effect photos from a few trial patients
« Reply #17 on: July 19, 2013, 08:08:28 AM »

Note about the history of JackP:

Guys, don't be too quick to judge him about the video. IT IS DEFINITELY NOT A PROMOTIONAL FOR XIAFLEX BY AUXILLIUM!! It is an attempt by him to show the true facts about the drug. As he says, it works for the right case of Peyronies Disease, but not for others. Remember the qualifications for being a part of their study!!! They exempted most of us from their "controlled study" by narrowing down what symptoms a person could have and not have!!!

This man has only one goal in his mind about Peyronies Disease: and, that is to help all the others on the forum that are now facing similar problems that he experienced. Read his blog in its entirety before condemning him for his work with this hospital and company. I have known this man on this forum almost from day one of its existence!! He has never had any intention of making dollars for himself by helping others!

So, bottom line, he is trying his dead level best to inform the general public of men and women on this forum about the true facts about Xiaflex. It is a very costly drug that many simply cannot afford. I share his position about this drug. My personal ortho doctor has used it for DC, but states his success rate is rather slim so he does not promote it very highly. I had DC surgery by him and he definitely would use Xiaflex for my case!!

The above is my personal take on the post by JackP below and urge any and all to listen very carefully about what he is saying.

Regards to all!!!

Old Man

Edit: Change the last statement in the post above to read...I had DC surgery by him and he definitely would NOT use Xiaflex in my case!!!
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Age 91. Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995. Heart surgery 2004 with three bypasses/three stents. Three stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries in the last 10 years.

jackp

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Re: Xiaflex side effect photos from a few trial patients
« Reply #18 on: July 19, 2013, 09:24:37 AM »

The video is an attempt on my part to bring knowledge about peyronies and its effects. I did not and will not receive or take any compensation for doing it.! I was contacted because my doctors at Vanderbilt told them they needed to hear my story.
Yes the video takes me through my onset of peyronies and all its phases. After a 15+- year struggle I finally had an implant to restore sexual function caused by peyronies. 
It is not a promotion for Xiaflex it is just a story of my history. It is an awareness video to make doctors aware of peyronies and how it affects not only men but our wife's. Yes my wife put her view in also.  It was completely unscripted and a story in our own words.
All of you than know me know that!
One thing I emphasised in the video is that general practice urologist should not continue to treat men who do not have the proper skills and training or respond to treatment. Don't do like a doctor did to me here try an implant without the proper tools and skills.  They should send them to a specialist like Dr. Milam.
Xiaflex is not a silver bullet! It may help some men with onset of peyronies. It has its limitations.
If you have had peyronies for over a year or have hour glassing don't even consider it.
Anyone with questions I will be happy to answer. In private send me a PM or email to [email protected]
I have not and will not accept any compensation for what I do. I know of sites that ask for donations and/or endorsements but I do not and will not. Those that do, in my opinion, are beholding to those that donate and/or endorse them.
Jackp
http://jackp-penileimplant.blogspot.com

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funnyfarm

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Re: Xiaflex side effect photos from a few trial patients
« Reply #19 on: July 19, 2013, 02:10:57 PM »

Jack thank you for answering my questions, and my apologies if I sounded confrontational, that was not my intent.  I think raising awareness of Peyronies is a wonderful mission and I applaud your contribution !  Certainly it takes a lot of courage to talk about this so publicly.   

Very few people knew what fibromyalgia was until a drug was approved for the treatment of the syndrome.  Maybe we will see a similar effect with Peyronies Disease/Xiaflex.
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RoyHobbs

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Re: Xiaflex side effect photos from a few trial patients
« Reply #20 on: July 19, 2013, 02:29:53 PM »

JackP-

Thanks for opening up and sharing your experience. I'm curious about your statement advising those who have had Peyronies for over a year or hourglassing should stay away from Xiaflex. Is this your opinion or did the Auxillium reps give you insider information that led you to this conclusion? Because I have to believe that a large chunk of their future clientele would basically be paying a lot of money for no reason if what you're saying is true. I'm a patient of Dr. Lue and I have some calcification. But my calcification is in small pieces grouped together. And so he believes that because there are gaps where the needle can fit through Xiaflex may still be able to help. I also have had peyronies for over two years and have a curvature of around 75-80 degrees upward. So how you came to this thinking is of great interest to me.

Roy
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MattFoley

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Re: Xiaflex side effect photos from a few trial patients
« Reply #21 on: July 19, 2013, 02:47:35 PM »

Just like RoyHobbs, I too am a patient of Dr. Lue's.

I received an email response from him yesterday about Xiaflex and Verapamil and he is firmly set on his position that Xiaflex is nothing short of a miracle drug that when properly used, it will significantly reduce the bend.

Although I had a 90% bend, after using various techniques found in this forum, the bend is closer to 45%. I'm praying that Xiaflex will further reduce the bend and lessen this nightmare.
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IhatePD

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Re: Xiaflex side effect photos from a few trial patients
« Reply #22 on: July 19, 2013, 05:48:56 PM »

My doctor is Dr. Metro in Norristown PA and he was part of the Xiaflex trials. He is very optimistic about Xiaflex and joked that when it is approved he will hold a large seminar to invite all his Peyronies Disease patients and inform them that it can benefit many of them.
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jackp

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Re: Xiaflex side effect photos from a few trial patients
« Reply #23 on: July 19, 2013, 05:58:38 PM »

Roy

I was told that with hour glassing Xiaflex would not help and should not be used.
 
The one year statement is based on our conversation about Xiaflex for men with onset of peyronies. My recollection of onset and may be to Conservative. Also men in the study did not have a curve over 50-60 degrees. Average curve reduction was 25% but there were some men with over 30 degree reduction and some with 18%.  Xiaflex did not help 50% of men in the study.

Once Xiaflex is available and establishes a track record in the general peyronies population I believe much of this will change. 

The most important thing for you is Dr. Lue is a your doctor. Follow his advise.

Jackp
http://jackp-penileimplant.blogspot.com

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LWillisjr

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Re: Xiaflex side effect photos from a few trial patients
« Reply #24 on: July 19, 2013, 08:27:56 PM »

jackp,
Glad you are back!!  I've also been contacted by Auxillium. I'll email you to compare notes.
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RoyHobbs

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Re: Xiaflex side effect photos from a few trial patients
« Reply #25 on: July 19, 2013, 08:43:01 PM »

Thanks for the reply, Jack.
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MikeSmith0

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Re: Xiaflex side effect photos from a few trial patients
« Reply #26 on: July 20, 2013, 04:03:24 AM »

Glad you are back!!  I've also been contacted by Auxillium. I'll email you to compare notes.

Just curious...how? Through this board?

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skunkworks

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Re: Xiaflex side effect photos from a few trial patients
« Reply #27 on: July 20, 2013, 04:56:16 AM »

I received an email response from him yesterday about Xiaflex and Verapamil and he is firmly set on his position that Xiaflex is nothing short of a miracle drug that when properly used, it will significantly reduce the bend.

Although I had a 90% bend, after using various techniques found in this forum, the bend is closer to 45%. I'm praying that Xiaflex will further reduce the bend and lessen this nightmare.

If I were you I'd wait though, till those who administer it realize that getting dose and location exactly right is necessary for a good outcome, and then get their practice in on other people.
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LWillisjr

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Re: Xiaflex side effect photos from a few trial patients
« Reply #28 on: July 20, 2013, 11:22:31 AM »


Just curious...how? Through this board?

No not through this board. That isn't why I was contacted. Auxillium has recently funded a new project (not a study). The project is to promote Peyronies awareness. I'm getting more information and will post it later to try to explain in better detail what they are doing. Initially this project is looking for Peyronies sufferers who are willing to publically share their stories. So I believe the initial contact was through their contacts with doctors. Dr. Levine gave them my name (with my permission) and I assume Dr. Milam gave them Jackp's name. But I have NOT confirmed if my and Jackp's contact was a result of the same project or something different.

I do know that the Auxillium project only received funding 2 weeks ago. I know at the end of the day the intent is to promote Xiaflex and to get insurance companies to cover it. It is not a given that Xiaflex will be covered even once it gets approval. I've spoken to the project representatives directly and will pass on information to this forum as I can.

I also know that the Auxillium project will be looking for others who are willing to publically share their stories as well. It is all volunteer and they are trying to establish a base of participants across the United States. I am receiving no compensation in any way to do this.

For me it is simply another opportunity for me to promote Peyronies awareness.
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Les - 10 yrs Peyronies Disease free
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funnyfarm

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Re: Xiaflex side effect photos from a few trial patients
« Reply #29 on: July 21, 2013, 01:50:00 AM »

I like the idea of raising peyronies awareness however I certainly hope they do not plan on recruiting guys with just a minor bend to become xiaflex customers..
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inkhorn

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Re: Xiaflex side effect photos from a few trial patients
« Reply #30 on: July 21, 2013, 07:27:22 AM »

Mike- Thanks for the link based on the info I don't qualify for the treatment, because I haven't been able to get a natural erection for 3 and half years since a prostatectomy. Man and I'm glad I can remove that as one of my options after reading the text and looking at the horror pictures. I have two questions that are semi related to this thread if anyone can help. 1. How is the degree of the curve determined? 2.Reading between the lines I can tell alot of guys on the forum are from the NE USA. I live in NJ about 20 minutes east of Philly. Can anyone recommend a speciality Uro, instead of me staying with my old school guy, that seems to know less about Peyronies then the guys on the forum? Regards Inkhorn
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IhatePD

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Re: Xiaflex side effect photos from a few trial patients
« Reply #31 on: July 22, 2013, 07:19:35 AM »

Inkhorn, I work in the South Jersey area and I went to Dr. Metro in Norristown PA. He is up to date and was part of the Xiaflex trials.
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inkhorn

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Re: Xiaflex side effect photos from a few trial patients
« Reply #32 on: July 23, 2013, 06:35:29 AM »

Thanks Hate-I'll look into him. Just feel like I need someone more cutting edge than I have right now. It seems like when I go there I'm recommending to him what my treatment should be and getting him to write the script!! I should have learned that when I had his practice deal with the prostate cancer, when instead I should have gone into the city. Regards Inkhorn
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LWillisjr

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Re: Xiaflex side effect photos from a few trial patients
« Reply #33 on: July 23, 2013, 08:14:57 PM »

1. How is the degree of the curve determined?

Sorry for the delay. Will send you an email later tonight.
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Les - 10 yrs Peyronies Disease free
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charlie44

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Re: Xiaflex side effect photos from a few trial patients
« Reply #34 on: August 13, 2013, 05:40:25 PM »

My doctor is a well known Peyronies expert and was involved in trials, and feels Xiaflex is a lot better than anything else from a chemical solution standpoint. In his words..."we don't have anything else" that really does anything..i.e..medicine to take or inject.

Also, some poster said his doctor said Xiaflex would not help hourglassing. That is what I have, and my doc has signed me up for Xiaflex injections. If it reduces plaque/scarring, it should help regardless of hourglassing or not.
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james1947

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Re: Xiaflex side effect photos from a few trial patients
« Reply #35 on: August 13, 2013, 05:56:54 PM »

charlie44

Can you post your doctor details?
It may help other members from your area.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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Gap

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Re: Xiaflex side effect photos from a few trial patients
« Reply #36 on: January 16, 2014, 11:31:47 AM »

There are good guys on east coast, dr. Mulhall is one. I decided to come across to Gelbard bc he had been working with the product the longest and had the most experience. When I first got verapamil injections in the city it was awful, then they loaded me up on pentoxy and I went from a bend to a corkscrew. Not sure if I was heading that way anyways, but I don't think it helped. Figured if I was going to do it, I might as well go the distance. I'm sure there are good guys everywhere. Also, from what I've heard, the post care at home is really important.
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emasculated

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Re: Xiaflex side effect photos from a few trial patients
« Reply #37 on: January 22, 2014, 11:03:05 PM »

Here is a probably stupid question: Why do they inject this medication in the first place? I mean couldn't they just as well apply Iontophoresis? I read an article where they tested Iontophoresis with Verapamil and it actually does transport the medication right into the tunica albuginea (just doesn't work very well with verapamil).

EDIT: After reading more about collagenese I can answer my own question I guess. It's because of the very low quantity of the stuff they use. So never mind...
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Greek

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Re: Xiaflex side effect photos from a few trial patients
« Reply #38 on: February 12, 2014, 08:30:21 PM »

I'm very anxious about beginning Xiaflex injections. The possible side effects sound down right debilitating. Can anyone who has had this treatment give me some feedback?
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james1947

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Re: Xiaflex side effect photos from a few trial patients
« Reply #39 on: February 13, 2014, 12:27:30 AM »

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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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MikeSmith0

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Re: Xiaflex side effect photos from a few trial patients
« Reply #40 on: June 25, 2014, 07:24:03 PM »

The person in the photos still has scarring from this now 3+ years ago.  The visible part of the scar is hard to see, but there are white lines still present.  And, they don't expand the same way as the rest of the penis.  The tissue is abnormal.   He might post pics and update the site - I asked. 

The doctor in the trial injected his fascia instead of the tunica albuginea.  The doctor was horrible...and had horrible reviews online for a long time until he likely had his own staff (and himself) added a ton of positive reviews.  His name is XXX (I was asked to remove it by the patient) and he is in New York city.

Dr. XXX's old reviews discussed how he'd give unannounced random prostate exams to patients & how the office was so cramped and small, that they'd leave the doors wide open & patients exposed.  The same thing happened to this person (and a prostate exam isn't even part of the Auxilium protocol - what the F? Why would he do that??) 


So, XXX caused this:

Auxilium Collagenase (Xiaflex) for Peyronies Disease - Clinical Trial Side Effects and Discussion

He also didn't let the patient remain on the table for the required period of time.  He stuck the patient in a storage closet (this is not a joke).  When sitting, the penis retracts in a flaccid state - so this was not good.  Then, they made up his blood pressure readings (it's supposed to be taken 4 times, 15 minutes apart - they just made it up).

So, that's who caused this.  Finally... I got the information...but I can't post all of it.
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james1947

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Re: Xiaflex side effect photos from a few trial patients
« Reply #41 on: June 25, 2014, 07:33:48 PM »

MikeSmith0

The pictures are frightening!!!
Did the guy take him to the court?

James 
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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RoyHobbs

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Re: Xiaflex side effect photos from a few trial patients
« Reply #42 on: June 25, 2014, 11:45:03 PM »

It's good to know that the doctor is at fault here and not the drug.
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CalSF

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Re: Xiaflex side effect photos from a few trial patients
« Reply #43 on: July 02, 2014, 09:27:56 AM »

I recently had several Xiaflex injections with Dr Tom Lue.  My first injection caused similar results.  I had two blisters, a lot of swelling, and black and blue.  Dr Lue was concerned by the reaction.  It began while I was still in the office that day.  He said, swelling and discoloration like that usually isn't seen until a day or two later.  I want to stress that a week later everything was fine.  I happened to be sensitive to the drug and its effects.  For the next shot, Dr Lue used a third of the dose and I had a great response and great results!  I'm extremely pleased with how things are progressing!!

Dr Lue explained in length about the necessity of injecting into the correct area.  This drug has the potential to do some damage.  Injecting to close to the urethra is a no no.  I have scar tissue on each side as well, but I cannot receive an injection in those areas due to the fact that they're too close to the urethra and the drug could potentially put a hole in it.  I always appreciated Dr Lue's candor.

For anyone planning on having Xiaflex, make sure you have a doctor who is very familiar with this drug and the preciseness of its administration!
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james1947

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Re: Xiaflex side effect photos from a few trial patients
« Reply #44 on: July 02, 2014, 10:21:34 PM »

Cal

You have stated:
Quote
....great results!  I'm extremely pleased with how things are progressing!!
Can you give us some more details regarding your improvements?

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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CalSF

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Re: Xiaflex side effect photos from a few trial patients
« Reply #45 on: July 02, 2014, 10:43:38 PM »

Cal

You have stated:
Quote
....great results!  I'm extremely pleased with how things are progressing!!
Can you give us some more details regarding your improvements?

James

Sure.  The Xiaflex in my case is being used to help with the hourglass effect.  So far, the left side has expanded back to normal.  The right however, hasn't seen much, if any improvement.  I saw Dr Lue yesterday and he said it looks like the another injection is needed on the right side.  I'll share one thing that it did for me inadvertently.  Last Thursday I decided to "try it out".  I made sure that the angle we were having intercourse made it so there was no bending or pressure on the penis.  Since it's "been a while", due to the treatments, it wasn't long before I reached orgasm...The only reason I mention it is to clarify that there wasn't much ware and tare on the penis.  As I orgasmed, there was a "crack" in the area where I've been injected.  There was immediate swelling and the next morning when I woke up, there was a lot of black and blue.  I went to Dr Lue and he did an ultrasound.  Turns out it was a good thing...One of the strands of scar tissue broke, which is the desired effect.  I got lucky and he told me to refrain for another week.
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james1947

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Re: Xiaflex side effect photos from a few trial patients
« Reply #46 on: July 02, 2014, 10:50:16 PM »

Thanks for the clarifications Cal.
Wish you continue with the good results.

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

CalSF

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Re: Xiaflex side effect photos from a few trial patients
« Reply #47 on: July 03, 2014, 08:16:00 AM »

I just wanted to take a moment and thank everyone for such an insightful website.  This is such a sensitive subject.  It's great to find a resource like this!  I feel fortunate to have found it!!

I really feel for a lot of people here that don't have access to a specialist.  After reading through the forum, it dawned on me how fortunate I am to live so close to Dr Lue and UCSF.  I saw an initial urologist but it wasn't long before he referred me Dr Lue, where treatment and progress has been swift.  I read a post yesterday where one forum member had been dealing with Peyronie's for 10 years!  I feel bad for anyone that has had to have treatment delayed due to lack of a specialist.  I'm not yet familiar with the other specialists out there, but if any of you have the ability to see Dr Lue, I suggest you take advantage of the opportunity.  He is an extremely kind and funny person!
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Inneedofafix

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Re: Xiaflex side effect photos from a few trial patients
« Reply #48 on: April 12, 2015, 06:01:18 PM »

In the early stages of beginning Xiaflex. Still debating. How can I view the gone wrong pictures? I want to see what can happen.
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LWillisjr

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Re: Xiaflex side effect photos from a few trial patients
« Reply #49 on: April 15, 2015, 05:15:00 PM »

Scroll to the first post. In the original post there is a link to a published document.
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Les - 10 yrs Peyronies Disease free
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