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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
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Author Topic: Xiaflex for hourglassing/dents/hinge (Septal plaque)  (Read 499 times)

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Dorian

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Xiaflex for hourglassing/dents/hinge (Septal plaque)
« on: June 10, 2022, 09:00:27 AM »

My current situation is that after 15 months of treatment, per my sig, I've had some minor improvements and have not gotten worse. I've never really had a curve but my main issues are hourglassing, dents, and a rather deep groove across the dorsal side that can hinge/fold a bit.  These have improved marginally with the kitchen sink I've thrown at it. I suspect mostly from traction/ved.

My doc said to give it 3 more months and then I can decide if I want to try Xiaflex. He said the data is around curves but the theory would be the same on plaque in general. His analogy was that plaque is a brick wall and Xiaflex destroys the mortar holding the bricks together. Again in theory, if this happens then it would allow for some release in my case. He further explained for hourglassing/dents that the plaque is in the septum. He said mine is rather small but he can feel it, which gives him a target.

This is a large hospital system in a major metropolis and he said they are doing a study on Xiaflex for atypical (non-curve) Peyronies. He gave me two polar opposite examples he's seen recently, one where the person had improvement and another where after several rounds there was zero improvement. He said it's just something to try and see, if I want, since he knows I'm doing everything I can. He said there were no negatives other that discomfort, swelling, and bruising. He was part of the original Xiaflex trials and in the near decade since he's only had one penile fracture.

Anyway, wanted to get some thoughts or experiences from anyone here in this regard.

Thanks,
Dorian
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47
Noticed less morning, and less strong, erections 2020
Noticed dents/groove/hourglassing/hinge near base 2021.
Urologist had me start Pentox, Vit E, Cialis, RestoreX.
I also started VED and all supplements in the guide.

Mikel7

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Re: Xiaflex for hourglassing/dents/hinge (Septal plaque)
« Reply #1 on: June 11, 2022, 05:24:28 AM »

Your Dr has informed you well  as Xiaflex is used as he has stated.  There are mixed outcomes as some men respond well to it and others don't. I believe it all depends on the location of the plaque and the surgeon performing the procedure.. One final note is the cost $$$.
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Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

FrankPD

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Re: Xiaflex for hourglassing/dents/hinge (Septal plaque)
« Reply #2 on: June 28, 2022, 02:30:14 PM »

Hello,

That’s my issue, plaque and hourglassing, no curve.  My second opinion uro said that Xiaflex would be perfect for my case but my insurance wouldn’t cover it because there’s no curve.  Xiafelx is about plaque, no?  It should be covered because it does cause discomfort.  That would be awesome to allow it to be used.  The hourglassing has gotten worse since my original diagnosis in January.  It’s been pretty stable now, knock on wood.  No pun intended.

Be well guys.
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Age 46
No injury.
Diagnosis January 2022.  
Have plaque and hourglassing. 
Still have my congenital curve, no severe curving.
Massaging with vitamin E cream twice a day. 
Low carb diet.
Discomfort/aching sometimes.
Best to all.

Kobegianna

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Re: Xiaflex for hourglassing/dents/hinge (Septal plaque)
« Reply #3 on: June 28, 2022, 05:04:39 PM »

“No negatives” bro c’mon man. There are so many more negatives then just swelling and bruising. if the plaque is in the septum I would even be less inclined to even try xiaflex. If the plaque is big enough and easily injectable the xiaflex may help since it would only be injected into the plaque only. The problem arises when the xiaflex is injected into other tissues besides the plaque, like the spongy tissue/erectile tissue. This will most likely cause irreversible Erectile Dysfunction. I wouldn’t risk trying to get injected with xiaflex in the septum. Too many other structures you have to avoid to get to the plaque. You are just a Guinea pig for them at this point.
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

Bud luck

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Re: Xiaflex for hourglassing/dents/hinge (Septal plaque)
« Reply #4 on: June 28, 2022, 09:20:10 PM »

Xiaflex can also destroy your healthy tissue, plenty of men got worse with Xiaflex injections, is a risky drug.
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My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My Erectile Dysfunction is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Dorian

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Re: Xiaflex for hourglassing/dents/hinge (Septal plaque)
« Reply #5 on: August 29, 2022, 10:36:06 AM »

Hi all,

Checking back on this to see if anyone has any additional thoughts or personal experience with Xiaflex for hourglassing/dents/hinging as the primary issue, rather than a curve.

I'm approaching the appt where I will be asked to make a decision on whether to give it a go or not.

Thanks,
Dorian
Logged
47
Noticed less morning, and less strong, erections 2020
Noticed dents/groove/hourglassing/hinge near base 2021.
Urologist had me start Pentox, Vit E, Cialis, RestoreX.
I also started VED and all supplements in the guide.

Shane43

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Re: Xiaflex for hourglassing/dents/hinge (Septal plaque)
« Reply #6 on: August 30, 2022, 02:49:21 PM »

I had hourglassing and significant hinging to the point sex was nearly impossible - and frightening. Large dorsal plaque at base of penis. I had only a 30 degree curve, but my urologist exaggerated to 70 degree and I got insurance to cover Xiaflex. I went through 3 rounds, six injections. The pain of the injection is real, but only lasts a few minutes (I had no anesthetic) so I think that is trivial. With each series of injections, the swelling, bruising and scrotal pain got worse. After the third series it took 3-4 weeks for all swelling and pain to go away. I decided to skip the 4th series and see what happens. Within a month or so, the indentation size and hinging were reduced significantly and I could finally have sex - carefully. There was still instability, but much better than the floppy penis I had before. Note, I can get good erections otherwise. This was all 2 years ago. So I was pretty happy with the results, even if I was still not that close to where I was before all this started (3 years ago). Then after another 6 months, my penis began to curve and shorten. But no additional hourglassing, no worsening instability. I went to see Dr. Levine in Chicago and he recommended traction for 6-12 months and then possibly surgery (partial excision and grafting). I have held steady the past year, possibly getting a little worse. But I can have sex in a few positions, albeit, I went from 7 inches to 5.5, I am thinner overall, and I have a 45 degree curve and small indentations half way down the penis. Overall, I would do the Xiaflex again because I do associate the decreased indentations and hinging to the Xiaflex and I went from no sex to pretty good sex. What I do about the new curve and shortening is what I am pondering now. I wish you good luck!
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60YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No Erectile Dysfunction. 3 rounds Xiaflex decreased plaque/indent/hinge/bend by ~50%. Can now have careful sex, but now getting worse. Saw Dr. Levine, will start PMP for 6 months

Dorian

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Re: Xiaflex for hourglassing/dents/hinge (Septal plaque)
« Reply #7 on: September 28, 2022, 12:28:00 PM »

I saw my doc today. The plan was to induce an erection, take measurements, and decide on Xiaflex.

I first showed him some current photos. My biggest problem at this point is a groove/dent across my entire dorsal size about an inch or two from my body that presents a definite weak spot/hinge if I'm not careful. This kink has become smoother after the 1.5 years of kitchen sink approach, but is still my primary problem along with some corresponding hourglassing in the area. I could live with my current state, I suppose. However, I can't help think that if Xiaflex afforded even the most mild of improvements, I'd be in that much better shape and would be near normal.

Doc said I have a small plaque on the dorsal side that goes down a bit between the two corpus cavernosum. About the size of a small pea in total. He said it's a definite target to work with.

As mentioned previously, he was part of the original Xiaflex trials and has been administering it ever since with high frequency. He has seen none, mild, and good improvements in cases similar to mine, but obviously cannot say with any certainty what I will experience. What he is seemingly more confident of is that I will not get worse as a result of Xiaflex and there should not be any negatives outside of discomfort and bruising. He said there are no guarantees but the horror stories I mentioned are just not something he sees in general let alone what he would expect with my specific case/size/location/etc.

Seeing if my insurance approves.

That's the latest.

Dorian

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47
Noticed less morning, and less strong, erections 2020
Noticed dents/groove/hourglassing/hinge near base 2021.
Urologist had me start Pentox, Vit E, Cialis, RestoreX.
I also started VED and all supplements in the guide.
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