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Author Topic: Thread for Guys in Xiaflex Trial - Currently or Previously  (Read 212028 times)

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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #700 on: August 19, 2015, 03:05:26 PM »

TonyStark - I could not believe my eyes when I got to the end of your post.  I live in Venice, Florida and spent a lot of time and energy searching for a Xiaflex doc in Sarasota and nearby counties.  After much phone time to Auxilium/Endo, I finally found a very experienced and highly reputable doctor.  I see him in a month ... Rafael Carrion.  Ha!  How great is that?  Actually, the Endo rep who helped me track one down said Carrion has had over 100 referrals from other doctors.  Apparently he is THE Xiaflex man to see in Southwest Florida, or indeed farther away than that.

FYI, guys, as of two days ago, the Auxilium Xiaflex Hot Line was "out of order."  The Endo folks told me there's been some communication glitches since the takeover.  However, I can't say enough good about the Endo folks that worked with me, transferring me around, trying to get me to someone who could help me find a highly experienced doctor.  They're not allowed to make recommendations, of course, but they can tell you how many referrals doctors have had.

This came about because I located a Xiaflex practitioner in Port Charlotte and he examined me and said I was a candidate.  I was shocked and delighted to learn that insurance would cover it.  But then the next day I did some investigating, because the uro made a couple of errors, like saying in my record I had a superior bend when obviously I have a lateral bend.  After finding that he's been sanctioned by the State and fined for malpractice, plus lost two malpractice suits, and learning I would be only his 3rd Xiaflex patient, I opted not to have this guy sticking needles in me.  Those of you who've read of my bromelain injection experiments know I'm not needle shy, but I'm scared to death of a doctor who's had 3 malpractice cases.

I'm looking forward to meeting and being treated by Dr. Carrion, Tony.  I'm glad you found him worthy of his reputation.
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gringoviajero

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Rafael Carrion in Tampa
« Reply #701 on: October 09, 2015, 07:30:20 AM »

Finally got in to see Dr. Rafael Carrion in Tampa.  He's much in demand.  My Peyronies Disease doctor in Baltimore, David Fenig, who himself is excellent, tells me Carrion is highly respected.  I found him thus far to be worthy of it.  He's engaged, he listens, asks many questions, does a thorough examination, does not patronize and gets to the point.

I've worsened, I believe, to 40º lateral with soft plaque running nearly the length.  He's recommending the Xiaflex protocol, and I'm waiting to be contacted by Bio-something-or-other, the manufacturer, apparently.  Insurance approved the treatment with another doctor previously, but I decided to go with Carrion, so the carrier must once again approve coverage.

I have confidence in Dr. Carrion, hope to begin the regimen soon and will post results.
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pfract

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #702 on: October 09, 2015, 08:11:25 AM »

That is so nice to read. Hope you are lucky with xiaflex. Looking forward for your future updates.

daved2

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #703 on: October 09, 2015, 07:25:35 PM »

Gringo
US Bioservices is the ne of rhe specialty pharmacy that will contact you. I went through a similar process.
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50 years old, tried 5 rounds of Xiaflex, had Egydio grafting surgery, then Stage sutures for residual curve, then plication in 9/18, now finally I have a straight penis

gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #704 on: October 22, 2015, 10:17:19 PM »

These US Bioservices people are a total pain in the ass.  This woman "Kim", who won't give her full name, keeps saying she'll get back with me yet does not.  I left a message one morning at 8:30 a.m., and when she called at 4:30 she admitted not having listened to her voice messages ALL DAY.  It's been THREE WEEKS since my exam with Dr. Carrion and still the USB people are dragging their feet and doing nothing.  I don't know why the doctor puts up with it; he doesn't get paid until I get injections.  From my experience thus far, the USB people couldn't manage a picnic.  Very irresponsible and unprofessional.  Unfortunately we have no choice.  And try finding the name of someone to complain to.  Check their webiste.  The last thing they want to do is give you an avenue of complaint.  It's like a secret company.  They have no interest whatsoever in the patient.  American medicine has descended to a sad level.
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Lucketts

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #705 on: October 23, 2015, 03:41:04 PM »



I am considering undergoing the Xiaflex injections.  I would like to learn more it, and also to minimize the side effects.  It would be greatly appreciated if guys who have already had it could respond to any or all of the following questions -

1.  Did you get a painkiller before the injection or just have the injection?  Did the doc induce an erection and then take it down a few hours before the injections?

2.  How long does the actual injection take?  Did you experience much injection pain?

3.  I know the doc wraps the penis after the injection, but did you ice it (before or after the injection)?  How soon afterwards, and for how long?

4.  Did you try to keep the penis north after the injection, so that any blood would drain down and not towards the head of the penis?

5.  Did you wait 1, 2 or 3 days after the first injection to get the second one?

6.  Did the doctor do in- office hand modeling after the second injection? How about after the 2nd, 3rd and 4th visit?  How many days after the injection did you wait for the modeling?

7.  After the injections, were you able to go about your daily business or did you have to recover a bit?

8.  Did any of you go for any more cycles after the 4th visit?

If you have any other helpful hints, that would be great.  Moderators -- I know that there is a lot of information in the threads, and I have read a lot of it.  But it would be helpful if we could have a fresh, active discussion and information gathering on this subject.  Thanks.
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #706 on: October 23, 2015, 07:18:41 PM »

Update on U.S. Bioservices: I found the name of a VP and e-mailed him this morning, and I got a call later this afternoon.  He'd lit a fire under somebody, and they were effusive in their apology and going out of their way to expedite the process.  This is a great restorer of faith in USB.  I've waited over 3 weeks for a simple insurance approval.  The problem is my insurer leaves Florida at the end of the year.  With six-week treatment cycles, if a 2nd cycle is called for, it must be approved by the insurer by the end of the year.  Time is therefore of the essence.

Luckett: I've yet to, but hoping to shortly, undergo the injections.  I have, however, as you can read in my other posts, experimented with bromelain injections.  I had "remarkable" results, as my doctor put it, but which did not last, unfortunately.  I can tell you not to be concerned about the actual needle sticks.  The tunica has few nerves, and you'll feel no more pain in the dermal layer then you would in, say, your arm.  Now as to any pain that may be caused by the drug, I cannot say.  But the needle stick itself is nothing more than a pinch.
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #707 on: October 24, 2015, 09:36:11 PM »

Daved2 - I suspect we have similar conditions: soft lateral plaque appx. 40º.  It's been a month since your injections, no?  Any change?

I was just reading elsewhere that the lateral tunicas are the thinnest portions, and some doctors do not recommend injection there.  However, they also said true lateral plaques are rare.  One urologist said I had a soft dorsal plaque, yet my bend is distinctly left lateral.  Rafael Carrion in Tampa is recommending the Xiaflex, and obviously he knows his stuff, so I'm anxious to see how he approaches injecting into soft plaque .
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BX642

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #708 on: October 26, 2015, 10:50:00 AM »

Here is my experience so far. I completed round one, two weeks ago. I start round two in four weeks.


I am considering undergoing the Xiaflex injections.  I would like to learn more it, and also to minimize the side effects.  It would be greatly appreciated if guys who have already had it could respond to any or all of the following questions -

1.  Did you get a painkiller before the injection or just have the injection?  Did the doc induce an erection and then take it down a few hours before the injections?

No painkiller prior to injection. The pain is temporary and tolerable. My doc induced erections in the early stages to explore plaque by utilizing Doppler. I do not believe that process will become necessary again.

2.  How long does the actual injection take?  Did you experience much injection pain?

The first one took about 25 seconds because the plaque was difficult to penetrate. The second took less than 10 seconds. Not much pain. I did experience significant bruising and some swelling after the first shot. I experienced very little bruising and swelling with the second shot.

3.  I know the doc wraps the penis after the injection, but did you ice it (before or after the injection)?  How soon afterwards, and for how long?

I left the wrap on for 24 hours as instructed, no ice was used and was not recommended.

4.  Did you try to keep the penis north after the injection, so that any blood would drain down and not towards the head of the penis?

No

5.  Did you wait 1, 2 or 3 days after the first injection to get the second one?

One week.

6.  Did the doctor do in- office hand modeling after the second injection? How about after the 2nd, 3rd and 4th visit?  How many days after the injection did you wait for the modeling?

I started the day after, no in-office modeling. 3 x per day 30 seconds as indicated, straightening during morning erections.

7.  After the injections, were you able to go about your daily business or did you have to recover a bit?

Resuming daily business was not an issue.

8.  Did any of you go for any more cycles after the 4th visit?

N/A

If you have any other helpful hints, that would be great.  Moderators -- I know that there is a lot of information in the threads, and I have read a lot of it.  But it would be helpful if we could have a fresh, active discussion and information gathering on this subject.  Thanks.

Key Point: I would make sure that you have a Urologist that has a lot of experience and a successful track record administering Xiaflex injections. My Urologist has changed his protocol based on many months of observation and experience.

Best of Luck

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Lucketts

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #709 on: October 26, 2015, 10:54:02 AM »



Very helpful ---thanks BX
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pfract

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #710 on: October 26, 2015, 02:20:25 PM »

Agree with that. Very informative post. Thank you

leonard182

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #711 on: October 26, 2015, 02:54:00 PM »

Does anyone know a good Urologist that has a lot of experience and a successful track record administering Xiaflex in northeast Florida? Thank you in advance!
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #712 on: October 27, 2015, 08:33:01 PM »

Leonard - If you don't find anyone in NE Fla., I can recommend Rafael Carrion down in Tampa.  As I gather, he's nationally, if not internationally, respected in Peyronies Disease treatment.  My uro back in Baltimore said Carrion is a "name" in the field.  I'm making the two-hour drive up from Venice to see him.  I've met him once (see my earlier post), and have confidence in him.

I learned yesterday that I've been given the green light by my insurer, Assurant, for the first cycle.  They're picking up 100%.  What a relief!  I've got soft lateral plaque running the entire length.  Carrion said the big question with mine is where exactly to put the needle.  I'm suggesting to him we do multiple aliquots along the entire length.

The only problem with Carrion is that he's so much in demand it's hard to get in.  He'll be out the entire month of November, so they can't begin injections until December.  I can't wait to see the results.
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leonard182

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #713 on: October 28, 2015, 02:40:38 PM »

Gringoviajero thank you very much for your response. I will give them a call.

Thanks again,
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PDHELP

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #714 on: October 29, 2015, 04:19:00 PM »

Leonard182 - You might want to check with Dr. Broderick at Mayo Clinic in Jacksonville, FL.
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pfract

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #715 on: October 29, 2015, 10:28:51 PM »

Gringoviagero,  thank you so much for sharing that info with us. Hope you have a good outcome when the time comes!

gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #716 on: December 23, 2015, 10:57:08 PM »

4 weeks post first cycle injections.  No improvement whatsoever.  I'm very cynical about this whole process.  I believe Auxillium is so fearful of lawsuits that they urge the doctors to take a very conservative path.  Doctors too are afraid, I suspect.  It seems many doctors are not following protocol by doing in-office modeling, probably for fear of a rupture.  Auxillium's patient modeling instructions use the word "gently" excessively to cover their collective ass.  We're told to do nothing for 2 weeks.  I suspect the reverse is true, that the drug is the most active and, thus, the most effective from the outset, and that immediate modeling is the best.  That's why the protocol calls for physician modeling.  But the doctor's aren't doing it, probably because they don't want to be sued either.  I'd like to see a time-line graph of Xiaflex' effectiveness, but that's not going to be made available to us, is it?  We don't have enough information, and it borders on deception.
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BX642

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #717 on: December 24, 2015, 01:34:56 PM »

Update on Treatment with Concern:

I had the second injection of round 2 a little more than two weeks ago. I have two areas of concern, Plaque at Proximal (next to base) and Plaque at Distal (directly below head). Plaque at base seems somewhat soft without pain, however, distal plaque has become painful to the touch and painful during erections. I have not had sexual activity since my first injection occurred, but I have consistent night time erections and some sporadic erections throughout the day. Once my erection starts it is a little painful, but if I attempt to bend my penis back into place the pain is sharp. I have seen some curvature improvement but the last time I had the injections I could go back to sexual activity after the two weeks had passed. Has anyone experienced this? I feel as if I am back in the chronic stage. I am anxious to slowly get back into things but I am concerned about potential damage. 
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Jay0330

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #718 on: December 28, 2015, 03:34:57 PM »

I have a 30 degree curvature got approved by insurance for xiaflex treatment, however my insurance expires on january 1 and my new insurance (medicaid) wont cover this. Basically, I have to get better insurance by January 31 to have this procedure but now after reading some of these horror stories, I am skeptical of even going through with this. Can peyronies get worse if untreated and if so, how fast does this disease progress? How long is the total treatment? How many injections does a round consist of? how many rounds are in the total treatment? my doctor kind of rushes me along when I ask these questions but I do trust him and he has all my info/pictures and has pinpointed and photographed markings of precisely where to inject. He has told me that to do this the right way I will basically need 2 courses of treatment. I am afraid to wait for this because I'm not sure if the injection site will change as this progresses. I have a few weeks to make a final decision. Any advice?
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #719 on: December 28, 2015, 05:35:46 PM »

Jay - I'm 33º left also.  I posted below.  Each cycle consists of 2 shots a day or two apart, with some doctors modeling you in-office following, others not.  4 cycle max.  All this info and more is available on Auxillium's site.

I think the risk is low or the FDA wouldn't have given the green light.  Horror stories make better press.  Only 5 guys out of more than 1000 had ruptures.  I can live with odds much worse than that.  My next year's insurance won't pay either, so I got in just under the wire with only 2 cycles possible.  It would be worth it to move to a new state just for the insurance to cover this.  I got my EOB today, and it was $15K just for the drug!

You can talk to U.S. Bioservices, the folks who handle the drug distribution to doctors, and they'll tell you what doctors have had the most cases near you.  You may have to cajole them.
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JDL

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #720 on: December 31, 2015, 03:22:10 PM »

Hello,

Age: 29

My Peyronies Disease began on September 4, 2014.
I have just finished both shots of round 1. The first shot was very painful but the whole thing was over pretty quick and did not hurt afterward.

The second shot did not hurt at all but there was a little more pain later throughout the day. I am very bruised and swollen. It doesn't not appear that my thick cord of fibrosis tissue has been diminished at all. I am not sure why. I will update in 2 weeks.
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shute99

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #721 on: January 11, 2016, 12:59:03 AM »

Hi all, great to a see a forum like this.

I just completed my first cycle of Xialflex shots (injection 1 and 2) and the third modeling visit. My experiences were much the same as most folks here Not much fun on the shots, but had minimal bruising with soreness at the injection area. I'm about 3 weeks out past the 2nd injection and during the home modeling I'm still experiencing pain around the injection point. No trouble getting erections but experiencing pain at the bend and pain when trying to "model" by putting pressure against the bend. Of course all are scared of the corporal rupture (so at the very least I'm super sensitive). Has anyone else experieced prolong pain from the injections or pain with erection for a period (after the injections)?

Thanks guys!
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #722 on: January 11, 2016, 05:48:45 AM »

Shute - I'm 6 weeks out of the first cycle; go in tomorrow for the first shot of cycle 2.  Yes, I had the same reaction to my first cycle.  I started with the VED after only 3 days, got scared and stopped from the pain, then resumed at 5 days, then stopped again a week or more later out of discouragement.  The whole thing is stressful because it's hard to know what to do.  What they tell us is obviously (to me and others) not the optimum procedure because of their fear of litigation.  This next round is my last chance because of insurance reasons.  I'm going to try consistent modeling, not too aggressive, but firm, and beginning the day of the injection.  I'll be pre-heating, doing the protocol stretch and bend, using a stretch strap and possibly VED.  Very stressful.  Not enough studies and too much concern for protecting doctors and Auxillium from lawsuits.
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shute99

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #723 on: January 11, 2016, 11:12:12 AM »

Great. Thanks Gringo. I agree. Very stressful and sounds like there's a pretty wide range on how each person's body is reacting. Lot's of moving pieces and variables that's for sure. I called my Doctor who had said the pain was normal and he would expect it to subside with more time. Basically the same thing....each body reacts a little differently and may take longer to heal. Appreciate folks sharing their experiences. My 2nd cycle is set to begin in mid February. Just got the news that my out of pocket was going to be $1,700 due to the change in insurance year, Yikes! Had only paid $150 out of pocket for the first cycle. I guess just another challenge in this process. I'll keep folks updated on my ongoing experience as well.
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TonyStark

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #724 on: January 11, 2016, 05:17:33 PM »

I wanted to give an update on my progress. I had my second injection in November of 2015 and it will likely be my last. The second cycle didn’t have much bruising at all. However, the second round of that cycle was very painful. It’s pretty much resolved now and my results are as follows.

Round 2 results
My bend is negligible at this point; maybe 5 degrees when fully erect. I’ve certainly seen some restored length and girth as well. For the most part it looks like my pre-peyronies days. That part I’m happy with.

The restored sensation is minimal. While it has improved it’s not what I hoped for. However, I will say that intercourse is more enjoyable than before and I guess the bright side would be I can last for quite awhile now. This is just something I’ll have to learn to live with unless they make progress in this area. I realize Xiaflex was not intended to restore sensation.

Round 3

After talking with the doc I’m going to hold off on round 3. While there is still some palpable plaque he’s advised me to hold off since my bend is virtually gone. His concern is any negative side effects from further injections wouldn’t be worth the risk. Since Xiaflex isn’t intended to restore sensitivity I tend to agree with him. So I’m just going to go test drive this thing for awhile and see how it goes.

What to do now?

I would like some feedback from you guys regarding this. What would you do in my situation? The US Bioservices people have given me 3 months to decide if I want to go through another cycle.

My original bend was about 35 degrees at the glans. Now it’s around 5 degrees but there’s still some palpable plaque that could be injected.

Any thoughts??
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james1947

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #725 on: January 11, 2016, 10:08:07 PM »

Will be very useful that members will post they results and update they posted results according to the format on:
FORUM XIAFLEX RESULTS - Peyronies Society Forums
It will help other forum members to decide to "be or not to be" a Xiaflex shutter :)

Thanks
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

QuackAttack

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #726 on: January 11, 2016, 10:54:17 PM »

Tony,
I guess your biggest question is one for your URO, which is: Is there any way the sensation gets better after another round? Will the plaque be completely gone after another round? Can the plaque come back after this round assuming no other injuries occur? If your URO says yes to #1 and #2, but no to #3, then it might be a no brainer.
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #727 on: January 12, 2016, 05:44:13 PM »

Tony, had my 1st shot of the 2nd cycle today.  Dr. Carrion is terrific.  He spent a very long time with me; I had several questions and issues to discuss.  I recommend him without reservation.  Peyronies Disease is all he does.  He is the go-to Peyronies Disease man in Florida (and not to be confused with another "Rafael Carrion" in Miami).  I drive up to Tampa from Venice and would go twice that distance or more for treatment from him at USF Health. 

My plaque is soft but extremely dense.  Carrion said it was like trying to get a needle into a tendon.  Mine is a difficult case.  If Xiaflex doesn't work, it's not for want of trying.
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Mr. Peckerwood

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #728 on: January 14, 2016, 02:09:31 AM »

Has anyone's curvature gotten worse after Xiaflex injections?  I am about one week out since my Xiaflex treatment and the curvature of my erection has gotten worse than before I had the Xiaflex treatment.  My doctor told me this is a normal thing a week in and to continue with modeling but I'm looking for others experiences and opinions on this.

Thanks
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #729 on: January 14, 2016, 07:56:24 AM »

Mr. Wood, coincidently I put that same question to Dr. Carrion just yesterday before my injection.  He said his group, USF Health, Tampa, has had only 2 cases.  This is out of a very large number, in the low hundreds.  The modeling is critical, no less important than the drug.
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yyy

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #730 on: January 16, 2016, 05:11:11 AM »

It's not normal at all to get a worsening of the curvature. If I were you, I would not believe anymore in your physician. Get other opinions from other experts.
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #731 on: January 16, 2016, 08:03:23 AM »

At one week you're still unstable.  Your penis is going through changes.  Do the modeling religiously and don't be shy about it.  Auxillium was extremely conservative with their protocol in order to get approval.  You can put some muscle into it.  At this point you have no other choice than to continue doing what you're doing until your six-week follow-up.  I'm 3 days out from my 2nd cycle.  On the first cycle I had no improvement at all.  But the chances of your worsening are very very slim.  Give it time and do the stretching.
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Mikey89

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #732 on: January 17, 2016, 10:17:11 AM »

For those who have gone through Xiaflex treatments and seen results.... How long after completing the cycle (whichever one it may have been that brought improvements) did you start noticing a difference in curvature? Since it's recommended to avoid sexual activity for at least two weeks after, I'd imagine this means the xiaflex agent is still active and working throughout this period. Did people see results after only a couple days? Couple weeks?

Thanks
Mikey
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #733 on: January 17, 2016, 11:20:13 AM »

The swelling can hide what's going on, distort it.  It will be only after the tissue has calmed down that you'll be able to get an idea of how you're shaping up.  And because the drug is still active for weeks, just because you don't show improvement soon doesn't mean you won't see positive results after a few weeks of modeling.  It takes time.
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x2

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #734 on: January 25, 2016, 04:03:08 PM »

The results vary a great deal in each case, in my opinion there are two basic factors: 1. the condition of the plaque and curvature. 2. the skills / experience of the urologist. I completed 4 cycles in September last year with self modeling along with using a traction device. Started from 38 degrees. By the end of the cycle, it was 30 degrees. $28K USD to reduce 8 degrees. I can't say it's a huge success for me, but any improvements are welcomed. The lesion didn't change at all. For me it's a long hard cord on dorsal, covering the entire shaft. Uro said I have to live with it for the rest of my life. I have read somewhere that a Mayo clinic Uro suggested using traction device within 24 hours because Xiaflex is at its best within approximately 48 hours. My uro was conservative and didn't approve traction until 2 weeks after each cycle, but I did it within 24 hours albeit my organ was bruised and swollen. If I didn't use traction, perhaps my results could have been even poorer.
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #735 on: January 25, 2016, 09:13:32 PM »

X2 - I'm glad you wrote; I couldn't agree more with your speculations.  I've had discussions with my doctor and done what I can to research this, and I've some experience in clinical trials.  From what I've learned, there's much going unsaid from the providers' and producers' side.  There's so much money involved, to say nothing of the fear of litigation, that things are being distorted.  And I myself hesitate to say what I've learned for fear of causing problems to those who've helped me.

But I can give my opinion and my speculations.  A lot was riding on the FDA approval of Xiaflex and so an extremely cautious protocol was designed to give the best chance of success, not successful outcome of the patient, but successful FDA approval.  There are contradictions, e.g. the patients are told to wait 2 weeks to model, yet the doctors are told to model immediately afterward, and they do so quite aggressively.  What does that say?  My thinking, and my recollection from organic chemistry many years ago, is that the drug is active from the time it enters the body.  I've searched for an activity timeline graph and found none.  My guess is that within a day the drug has penetrated the collagen and begun softening it, and that modeling should be done right away.  I'm guessing, too, that two weeks post-injection the effectiveness has greatly diminished, i.e. what we're instructed to do is the opposite of what we should be doing.  The emphasis is on avoiding a fracture, but only 5 of 1055 subjects suffered a rupture.  Auxillium's instructions are not meant to give us the greatest chance of success but to diminish as much as possible their vulnerability to lawsuits.  Else, why are doctors told to aggressively model us within 24 to 48 hours?

Like you, I have soft plaque running the entire length.  See my other posts for details.  My first series produced nothing.  After the 2nd cycle I immediately began aggressive modeling with a variety of methods (manual, stretch strap, VED) and now I'm seeing results.  I'm 12 days out.  I believe by the two-week mark, when patients are told to begin modeling, the drug is so weak that it's a waste of time.  I believe modeling should begin right away and last only 3 weeks at most.  The entire protocol was designed around getting FDA approval and not in the best interest of patients.
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x2

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #736 on: January 26, 2016, 01:32:39 AM »

gringoviajero - thank you for your reply. I really appreciate your feedback and sharing information and opinions. They are helpful to me and hopefully to many other Peyronies Disease patients seeking Xiaflex treatment as well. You are absolutely right:  Xiaflex is the most effective within 24 hours after the injection. It starts to wear off after just one or two days. It has no effect after a week or so. Thus, starting modeling ASAP is extremely important. Also, an experienced uro is essential.

My Peyronies Disease is still bothering the hell of me although I have had some improvements after completing the 4 cycles. For me, 30 degrees curvature is unpleasant but my wife and I can live with it. Shortening and wasting caused by the cord like lesion make me feel very miserable daily! If I could be treated with a few more injections, I believe I will see more improvements, but for the time being, it is unlikely to happen.

I hope the rest of the cycles will go well for you and you will see better results! Keep me posted please.
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #737 on: January 26, 2016, 02:59:19 PM »

X2 - Is your determination that the drug dissipates quickly based on your experience, or have you come across some information about this?  I've searched to no avail to find a timeline graph or table showing enzymatic activity plotted against time.  I suspect these data are known but suppressed. 
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Ive

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #738 on: January 27, 2016, 12:15:16 PM »

It's funny you posting this x2.

I was on a trial in the UK some six months ago and achieved good results.

The protocol then was two injections/wait two weeks/VED or modelling/four week gap. Total of four cycles like this.

Only today I rang to speak to my consultant who did these about further injections which, if I decide to go ahead, I will have to pay for.

He was quite open about it and said that he didn't think the protocol above we used for the trial was in the best interests of the patient. If I go ahead, his treatment now would be one injection/VED immediately twice a day for a week/then same cycle after six weeks x 2. In other words three single injections, immediate VED for a week after each with a six week gap in between.

This would certainly seem to support your argument about how and why the protocol was put together for the trials.

And finally a confession which would seem to support this even more.

Although we promised we would follow the trial protocol to the letter, I didn't, and started using the VED immediately I got home from having an injection.

Surprise, surprise my improvement was one of the best on the Trial.
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #739 on: January 27, 2016, 04:36:01 PM »

Ive - that's my game plan for the next cycle, my third.  I've been doing the manual stretch 2x/day (but more aggressively and for longer), VED 1x/day, stretch strap 2x/day for 2-3 hrs.  The manual stretching and VED are preceded by 20 minutes of heating.

On the next go-'round I'll do VED 2x/day, as you say.  All this starts the day following injections.
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x2

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #740 on: January 28, 2016, 12:27:49 AM »

gringoviajero - I remember clearly I read some one's posting about using traction device on  the same day of the xiaflex injection. Perhaps it was quite sometime ago and the posting might be deleted by the author? (I searched it too, using keywords such as xiaflex - traction - mayo, but I couldn't find it). I can assure you it was a Peyronies Disease patient who was given Xiaflex at Mayo. There was no detailed graphs or such. It was merely a remark in passing. I also remember he said he put on the traction device in his car when he drove home from Mayo and one day the traction device fell off (something like that) because his plaque was stretched longer.

My uro was against using traction soon after Xiaflex injections as I mentioned here. He emphasized that VED is more risky. So please be careful with VED after the injections. Traction seems a bit safer especially if you don't increase the tension too much.

Good luck!
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james1947

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #741 on: January 28, 2016, 12:41:11 AM »

Not just Xiaflex , but using VED immediately after any kind of injections.
I done it after one of my PRP sessions and I had to stop immediately because blood was sucked out from the injections little holes.
I think the PRP also!!!

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

gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #742 on: January 28, 2016, 05:49:26 AM »

James - Yes, I agree.  I should have clarified my protocol.  Using a VED soon after injections would result in blood leakage, no doubt.  That part of my protocol ought to wait 48 hours, I should think.  However, I think it has been beneficial as it creates pressure from within in all directions, not just linear, which is all stretching does.  Also, what I do is, after removing the VED, I grip the base and the glans very firmly, putting blood pressure on the central shaft, and bend it opposite my curve.  This creates internal pressure against the plaque.

I think approaches for soft plaque treatment must differ from those for hard plaque.  Hard plaque is like a callous with borders and easily defined.  X2 and I have soft plaque covering a large area.  As Dr. Carrion says, it's like having a tendon in your penis.
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x2

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #743 on: February 03, 2016, 12:47:30 AM »

gringoviajero -

I have been puzzled for 3 years since I was diagnosed with Peyronies Disease. Since you were saying we had similar plaques -  tendon like plaque in our organs. I would like to share my experience with you.

Here is my story of how the "tendon" was formed: At first, I felt a slight pain in my organ when it was erected. I didn't think too much about it. One day, I felt a nodule on dorsal near base in the size of a grain of rice. I googled penile illnesses and figured out I might have Peyronies Disease. I went to see a uro and he confirmed it. Since the nodule was small and there was no curvature back then, uro told me wait and watch. In about 3 months, I started noticing a curvature of 20 degrees, but the nodule size was unchanged. I was worried that it would get worse. Uro recommended Verapmil shot. So I went through 5 Verapmil shots. I felt the nodule became bigger and longer each time after the shot. I decided to stop the Verapmil shots. Soon after the Verapmil, I noticed a cord like thing (or the tendon so to speak was formed from the position where the original small nodule was ALL THE WAY to distal. My Curvature turned into 46 degrees! 

I don't want to blame my uro for this. His intention was to help me. Whether or not Verapamil turned a small nodule into a long, hard "tendon", about 1/4" wide and covers the whole shaft and 45 degrees upward curv, no one will ever will get to the bottom of it.

I am just wondering how your "tendon" or the hard cord was formed? Did you have verapamil shots?

I read stats somewhere only small % patients had benefit from Verapamil.  Some got worse. I am pretty sure I belong to the group that Verapamil made it worse.

I got better on my own after I stopped Verapmil. 46 degrees reduced to 39ish WITH NO TREATMENT after about one year. Then I had 4 cycles of xiaflex. Now I am at 30ish degrees upward bend. The other difficult problem I have is the shortening. I lost 1.5". Clearly, the tendon is pulling the shaft to make it short.

I feel the Xiaflex was merely doing damage control to the adverse effect that Verapmil has caused.

I will appreciate it very much if you could tell me how your plaque was formed. Did it have anything to do with Verapamil shots.

Thank you in advance!
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #744 on: February 03, 2016, 03:59:17 PM »

I've not taken Verapamil.  My initial symptom was painful nocturnal erections.  There was no palpable plaque back then.  After two years the curve began and the soft plaque could be felt.  I wasn't officially diagnosed until 2 years after that, 5 years after the initial symptom.

I've no explanation as to why it formed, just as most sufferers have no explanation.  I don't remember any injury, and my father says he has no curve.

My 2nd Xiaflex cycle has helped bring me down from 33º to perhaps 25º, and it has changed the shape slightly.  I did vigorous pre-heating and stretching, VED and stretch-strap after this 2nd cycle.  I have the 3rd cycle coming up in a month.  I've regained the length I lost to Peyronies Disease.  The doctor was very aggressive with the 2nd cycle.  I think one cannot treat our plaque lightly as it affects a large area of tissue.  The drug must be dispersed broadly and the modeling begun the following day and done aggressively.  I am not concerned with rupture.
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x2

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #745 on: February 03, 2016, 10:10:28 PM »

Thanks for your reply gringoviajero.

You said your doctor disbursed xiaflex broadly. Did you mean it was injected into multiple locations of the long plaque? My doctor injected xiaflex into one spot for each injection. All 8 injections was at the same spot. He determined the spot by finding the most curved point from an induced erection. The 4 cycles reduced 8º. I asked the doctor if it's possible to inject into multiple locations since my plaque is about 4" long. The answer was no.

I am glad to hear you have much better results. 33º to 25º after the 2nd cycle - that is a lot of improvement!
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #746 on: February 03, 2016, 11:50:43 PM »

Your approach was exactly the same as mine.  I asked him about giving aliquots along the entire length, and he too rejected the idea and focused on the indentation and interior angle of the bend.  When I say dispersed, I mean instead of inserting the needle into one location and drawing it out while injecting, as is done with hard plaques, he penetrated the skin at one point, but then inserted into the tunica at various points.  I understand his approach; the primary concern is relieving the bend. 

I believe you're right in thinking that injecting the drug along the length of the plaque followed by aggressive stretching would restore your lost length.  The problem is they have only a small amount of drug to work with.  If cost wasn't such a big factor, I think their approach would be different, they would be much more liberal, particularly in soft plaque cases like ours.

If you have the opportunity to get the drug again, I would suggest a serious conversation with the doctor about dispersing the drug over a broader area in the neighborhood of the bend, making several punctures of the tunica.  Our plaque can't be treated like the others.  And I would begin modeling next day.  I've explained my regime in previous posts.  Heat is important.  That's not speculation but based on studies of heat and cold on colagen.  Heat not only softens the fibers but increases enzymatic activity.  Heat before stretching and heat before the VED.  I go to bed with a stretch strap and it wakes me after 2 or 3 hours and I remove it.  It's not harmful and not uncomfortable.
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x2

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #747 on: February 04, 2016, 06:21:01 PM »

gringoviajero, thank you again for your post. I highly doubt that my uro would give me more xiaflex treatment because: 1. the insurance will not pay again. 2. my curvature is now at 30º. It has to be greater than 30º to qualify the treatment. I have continued using the traction device since the completion of the 4 cycles. I have not seen improvements but I will keep trying.

Thank you for the tips on heat. I am going to use heat before I use the traction device from now on. It makes a lot of sense, especially I live in a very cold climate.
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gringoviajero

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #748 on: February 07, 2016, 06:41:05 PM »

X2 - The 30º threshold is for the trials, not treatment.  The physician is supposed to stop treatment when you reach 15º.  Your issue is just money.
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waitingforxiaflex

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Re: Thread for Guys in Xiaflex Trial - Currently or Previously
« Reply #749 on: May 22, 2016, 04:51:08 AM »

Moderated - Please don't make duplicate posts.
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