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

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Author Topic: My Xiaflex results  (Read 1135 times)

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Sebtp1973

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My Xiaflex results
« on: July 05, 2022, 07:17:53 PM »

It seems to be working well.

I started round one last week. I got my first shot Tuesday and second Friday. I had some considerable bruising and some swelling but no pain, except for some tenderness at the injection sites.

I’ve taken a more aggressive modeling/stretching regime than my doctor recommended. I did some hand modeling starting the days of my shots. I started Restorex on Saturday morning, less than 24 hours from my second shot. I’ve been doing two thirty minute Restorex sessions a day since then. I only stretch straight, no counter bending.

I’ve been taking cialis too, and straitening my erection a couple times a day. I get nocturnal erections too.

I still have a curve, but to me it looks shallower than before. I hesitate to estimate the curve yet, because I might not have a full erection when I look at it and also the swelling might be masking some of the curve, but it sure seems like there is progress already.
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57 yrs old.
45 degree upward bend initially. Xiaflex and traction.
Finished round one Xiaflex July 1, 2022. After round 1, my doctor estimates my curve is 30 d. Completed round 2 on August 26, round 3 October. Dr estimates 20 d curve.

P11050

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Re: My Xiaflex results
« Reply #1 on: July 08, 2022, 03:22:15 AM »

That’s great!  Keep us posted on how things are going.  A lot of guys don’t get significant change until the third round in the series.
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Sebtp1973

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Re: My Xiaflex results
« Reply #2 on: July 08, 2022, 12:50:36 PM »

Thanks. The bruising is now gone, as is the swelling (I liked the swelling!).

I religiously do the Restorex traction twice a day. I also do hand stretching every time I pee. I started doing some counter bending by hand. I haven’t straightened my boner in a few days, as my erections are mostly nocturnal, and I don’t bother when in bed.
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57 yrs old.
45 degree upward bend initially. Xiaflex and traction.
Finished round one Xiaflex July 1, 2022. After round 1, my doctor estimates my curve is 30 d. Completed round 2 on August 26, round 3 October. Dr estimates 20 d curve.

Sebtp1973

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Re: My Xiaflex results
« Reply #3 on: July 15, 2022, 02:57:30 PM »

It’s been two weeks since my first round of Xiaflex. I’ve seen progress. The curve just seems less “sharp”. It looks like a normal curve at this point. I’m married, but if I wasn’t and had a new partner, I bet she wouldn’t think anything of it. Whereas before, it would definitely be noticed.

It’s funny, I always had a natural left curve my whole life. Every girl I was with would notice, both visually and they said they felt it. It never bothered me or my partners. It was not ugly or weird looking. Some girlfriends  would joke about it with me, which I liked.

The peyronies upward curve to me was ugly and weird. As they say about peyronies, “a deformity “.

My penis now two weeks post Xiaflex doesn’t look deformed to me, just a natural curve. I could stop here, but I am greedy and want it even straighter.

By the way, the natural leftward curve I always had, I don’t see it now. Maybe from all the Restorex stretching I reduced it, or maybe the upward curve is affecting it.
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57 yrs old.
45 degree upward bend initially. Xiaflex and traction.
Finished round one Xiaflex July 1, 2022. After round 1, my doctor estimates my curve is 30 d. Completed round 2 on August 26, round 3 October. Dr estimates 20 d curve.

chrisaaa7

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Re: My Xiaflex results
« Reply #4 on: July 15, 2022, 03:56:16 PM »

Congrats man! That’s great news, I hope you continue to see progress in the following weeks/months as you continue with the xiaflex injections. Keep us updated, good luck.
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M 21 Los Angeles

Saw Urologist at USC who handles Peyronies alot and he does not believe I have it. Symptoms: soreness in flaccid state, glands do not engorge, 2 very small. indents, slight girth loss( last 2 might be mental),Erectile Dysfunction for 2.5 years

FlatteningTheCurve

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Re: My Xiaflex results
« Reply #5 on: July 18, 2022, 04:49:07 PM »

Thanks for this post Sebtp, keep us posted and do not hesitate to add more details if you feel comfortable.

Really helpful for the rest of us to see these kind of positive posts and stories here!
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Early 30s, diagnosed with Peyronies in 2017 after trauma during sex. ca 15 degrees upward curvature. Restorex, VED, 5mg Cialis, Pentox, L-arginine, Coq10, Propolis, Vitamin E. Underwent 12 rounds of Verapamil injections 2021-22

Sebtp1973

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Re: My Xiaflex results
« Reply #6 on: July 18, 2022, 07:49:24 PM »

Thank you.

I’ve been counterbending 2x a day, 30 minutes each. I started out doing just straight traction, but I read something on here from Trost saying counterbending improves curves better in his studies.

I think doctors and the xiaflex manufacturers might be too cautious about avoiding penile fractures. In the studies, they happened very infrequently. I think you need to be somewhat aggressive in “bending the curve”. But I’m not expert, listen to your doctor.

It really helps working from home to have the privacy of doing two 30 minute sessions a day. It will be more challenging when I got back to the office later this year.

I haven’t observe my erection and curve in a few days. I don’t want to look every day, it’d be like watching grass grow. I want to be surprised by a noticeable improvement, which hopefully occurs if I let some time elapse.
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57 yrs old.
45 degree upward bend initially. Xiaflex and traction.
Finished round one Xiaflex July 1, 2022. After round 1, my doctor estimates my curve is 30 d. Completed round 2 on August 26, round 3 October. Dr estimates 20 d curve.

BMarc

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Re: My Xiaflex results
« Reply #7 on: July 24, 2022, 03:58:28 PM »

How it going since your last post?  Seems like multiple people are having more success with this aggressive modeling after Xiaflex.  Is "aggressive modeling" basically doing the standard RestoreX procedure?  It sounds like that is what you're doing if I'm not mistaken.  Thanks!
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Sebtp1973

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Re: My Xiaflex results
« Reply #8 on: July 25, 2022, 02:03:11 PM »

What I’m calling more aggressive is doing hand modeling and Restorex sooner than what my doctor recommends. It seems to me you need to strike when the iron is hot, but don’t listen to me, I have no idea how all this stuff works (truthfully, I don’t think the doctors do either).

Dr Trost talks about aggressive modeling, but I’m not entirely sure how he is doing it. He goes for “small controlled fractures” that give substantial immediate results, but I have not experienced that. He says some of his patients hear/feel the scar tissue ripping apart. I have not experienced that. See videos for Dupuytrens fingers being fixed with Xiaflex (I posted a thread in this). The doctors takes the crooked fingers the day after the Xiaflex injection, pulls it straight very hard, you hear a crunch, and boom the finger is straight.  It almost sounds like Trost is trying to induce something similar to the penis.

I still have a fairly substantial upward curve, it just looks less “deformed” at this point. The sharp edge of the curve is gone. Maybe the head ends up near where it was before, but it gets there more gradually, so to me it looks more like a normal curve. Or maybe the curve has been reduced 5-10 degrees and that’s enough to make it look healthier. I have not measured the new curve.

I’ve only had one round. My plaque is on the top left side. With the first shot, the doctor injected the bottom half of the plaque. As he was injecting, he was saying how hard it is getting the injection in, and his thumb hurts. Then I got the second shots three days later for the top half of the plaque. He said the bottom half felt a lot softer already. Again he had to push the plunger hard to get it in the top half. He came back after about 5 minutes and said his thumb still hurt, and showed me the indentation in his thumb.

I go back in around three weeks for round two. I hope to see progress again. 

From an article about Trost’s aggressive modeling:
Quote

Discussing the findings, study co-author Landon Trost, MD, said, “The study wasn't real surprising, but it was more so when we started implementing it that you notice it right away in clinic, because we'd have patients who would send us pictures after the fact. And we had some that would get a single injection and were fully straight, which we'd never had before. And so we immediately knew that there was something to this.” Trost is the director of the Male Fertility and Peyronie’s Clinic in Orem, Utah.
https://www.urologytimes.com/view/aggressive-cch-technique-is-linked-to-improved-curvature-in-peyronie-disease
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57 yrs old.
45 degree upward bend initially. Xiaflex and traction.
Finished round one Xiaflex July 1, 2022. After round 1, my doctor estimates my curve is 30 d. Completed round 2 on August 26, round 3 October. Dr estimates 20 d curve.

Sebtp1973

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Re: My Xiaflex results
« Reply #9 on: August 20, 2022, 12:46:20 AM »

Well I saw my bill for my first round. The insurance company was charged $35k, and my insurance says I’m responsible for $2,500! Wasn’t expecting that. I got pre-approved, and was led to believe my out of pocket would be $400 per round, and Endo would reimburse me for that. I was expecting essentially zero out of pocket. Ugh, if each round is $2500, I will probably stop at round two (scheduled for next week).

I’m going to call my insurance company next week to see if there is a mistake or something still needs to be processed. I’ll also see how much Endo is willing to reimburse.
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57 yrs old.
45 degree upward bend initially. Xiaflex and traction.
Finished round one Xiaflex July 1, 2022. After round 1, my doctor estimates my curve is 30 d. Completed round 2 on August 26, round 3 October. Dr estimates 20 d curve.

Tobyg

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Re: My Xiaflex results
« Reply #10 on: August 20, 2022, 06:05:05 AM »

I've done manual traction several times, and I can feel the fibrosis 'breaking', my symptoms are noticeably better for a few days but then I feel a little burning and it gets hard again, the symptoms tend to change, some get better and some get worse, that's why I do not recommend it.
Sometimes I think that I have to keep the penis stretched once I feel that this fibrosis breaks down for a few days until it hardens. (so this doesn't retract).

I didn't try the device, maybe combined with another treatment it will help, I don't know.
I also have doubts if stretching the penis causes loss of elasticity.

This is my experience.
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30 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.

Sebtp1973

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Re: My Xiaflex results
« Reply #11 on: August 22, 2022, 04:59:12 PM »

Well I saw my bill for my first round. The insurance company was charged $35k, and my insurance says I’m responsible for $2,500! Wasn’t expecting that. I got pre-approved, and was led to believe my out of pocket would be $400 per round, and Endo would reimburse me for that. I was expecting essentially zero out of pocket. Ugh, if each round is $2500, I will probably stop at round two (scheduled for next week).

I’m going to call my insurance company next week to see if there is a mistake or something still needs to be processed. I’ll also see how much Endo is willing to reimburse.

I called my insurance and they said the doctor did a “buy and bill” and it would have been $400 for two vials if he ordered through the preferred pharmacy.

My next call was to Endo, and they said I am eligible for reimbursement of up to $1,200 per vial, which would make me whole. They are going to email me the reimbursement form. I need to send my bill and insurance EOB, and they said it takes about 7-10 days to be reimbursed.
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57 yrs old.
45 degree upward bend initially. Xiaflex and traction.
Finished round one Xiaflex July 1, 2022. After round 1, my doctor estimates my curve is 30 d. Completed round 2 on August 26, round 3 October. Dr estimates 20 d curve.

Sebtp1973

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Re: My Xiaflex results
« Reply #12 on: August 23, 2022, 07:38:01 PM »

I just got back from my second round first shot. My doctor said my plaque has split into two pieces, which is obviously good. I think that is why I saw progress. The breaking of the plaque into two pieces took some of the edge off the curve. It used to sort of curve up with a twist . The twist is gone. The doctor said I’m making good progress, and a lot of guys don’t see progress until the 3rd or 4th round.

The doctors office had the paper work ready for me to sign to get reimbursed by Endo, so I should pay zero for the Xiaflex.

I’m stretching with Restorex now, about an hour after my injection. I’m doing a straight stretch (no counter-bending) with less force than normal (white lines barely showing).

There’s no pain now, but he numbed me up. No bruising or swelling, but I will see that tonight or tomorrow.

I go back on Friday for more shots.

Here’s a strange thing no one else has noted as far as I could tell. Xiaflex has an odor. I noticed it first round, and I notice it again. Not a bad odor, maybe metallic or medicinal smelling. I thought I imagined it first round, but smelled it again when I got home today and peed.

Also, I’m impressed with my doctors ability to feel the plaque. I don’t feel anything. He said, just based on feeling it, the plaque split in two, and the top half is smaller than the bottom half. He used a pen to show me the two pieces.
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57 yrs old.
45 degree upward bend initially. Xiaflex and traction.
Finished round one Xiaflex July 1, 2022. After round 1, my doctor estimates my curve is 30 d. Completed round 2 on August 26, round 3 October. Dr estimates 20 d curve.

Sebtp1973

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Re: My Xiaflex results
« Reply #13 on: August 27, 2022, 12:50:07 PM »

I saw my doctors note from my Tuesday visit, he estimates my curve is 30 degrees going into the second round. He had me bring in a recent pic. No protractor used, just his estimate from looking at it. So from 45 degrees to 30. And there’s more improvement since then.

My plaque split in to two pieces since the first round. On Tuesday, he injected the larger bottom piece. I came back yesterday and he injected the smaller top piece. He said the bottom piece feels softer due to the Tuesday injection.

I’ve had hardly any bruising, save for small spots at the injection site. I have some mild swelling.

I’ve been using Restorex without stopping, 2x a day, even on injection days. I don’t do counterbending on injection days tho, just straight traction. I’m not following my doctors advice, and I guess I am risking a fracture. I’m also taking tadafil and getting nocturnal erections, which is a type of traction. I saw my erection last night, and I’ve seen a big improvement again. Maybe it’s down to 20 degrees now, but I’m not good at estimating. The swelling might be masking some of the curve too.
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57 yrs old.
45 degree upward bend initially. Xiaflex and traction.
Finished round one Xiaflex July 1, 2022. After round 1, my doctor estimates my curve is 30 d. Completed round 2 on August 26, round 3 October. Dr estimates 20 d curve.

BMarc

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Re: My Xiaflex results
« Reply #14 on: August 27, 2022, 12:53:03 PM »

Congrats on the improvement!  Did your initial curve have a dent or hinge?  If so is that narrowing looking better also?
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Sebtp1973

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Re: My Xiaflex results
« Reply #15 on: August 27, 2022, 01:16:31 PM »

Congrats on the improvement!  Did your initial curve have a dent or hinge?  If so is that narrowing looking better also?

More a dent than a hinge. Where the plaque is, on the top left side. I think that improved too, but it is hard to say now due to the swelling.

As far as the curve, I had a congenital curve to my left my whole life which is now gone. And my curve up now could be the same degree or even less than my former natural curve. I heard upward curves are better for sex (the left curve would sometimes give a moments pain to my partners until they got used to it). Upward curves rub the right areas.
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57 yrs old.
45 degree upward bend initially. Xiaflex and traction.
Finished round one Xiaflex July 1, 2022. After round 1, my doctor estimates my curve is 30 d. Completed round 2 on August 26, round 3 October. Dr estimates 20 d curve.

Sebtp1973

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Re: My Xiaflex results
« Reply #16 on: October 27, 2022, 06:10:21 PM »

Got my third round of Xiaflex a week and a half ago. I brought a boner pic, and the doctor estimated a 20 degree curve. I wouldn’t say that’s absolutely accurate, since he looks at the pic for a second, and I wasn’t 100% hard in the pic. But nonetheless, there’s been a noticeable improvement from the pre Xiaflex curve of around 45 degrees.

The most noticeable improvement was after the first round. A couple days after the shots. I learned later the plaque split into two pieces. That made the curve less sharp. I believe my use of restorex right after the shots split the plaque.

At my last appointment, he said the top piece is really small. He said the plaque in the larger piece feels much softer now.

He said Xiaflex is active for 2-3 days. I like doing traction while it’s active.

Next appointment is in December.
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57 yrs old.
45 degree upward bend initially. Xiaflex and traction.
Finished round one Xiaflex July 1, 2022. After round 1, my doctor estimates my curve is 30 d. Completed round 2 on August 26, round 3 October. Dr estimates 20 d curve.
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