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Author Topic: Xiaflex with fibrosis (no peyronie)  (Read 275 times)

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alejelq

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Xiaflex with fibrosis (no peyronie)
« on: May 06, 2021, 06:08:17 AM »

I am going to try Xiaflex as a last thing before an implant. But I don't have Peyronie. but only diffuse fibrosis. Has anyone been successful with Xiaflex despite not having Peyronie's plaque but only scar tissue? I'm afraid because I don't even know where to get injected, since I don't have a real plaque. If anyone has experience with Xiaflex and fibrosis let me know! Thank you all!
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26 years from Italy
Injury from Jelqing in 2018
Diagnosed with Peyronies disease in February 2021, after many visits and treatments.

Hawk

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Re: Xiaflex with fibrosis (no peyronie)
« Reply #1 on: May 06, 2021, 09:05:16 AM »

You don't mention symptoms in your signature line.

Do you have Erectile Dysfunction?
Do you have deformity?  If so what is the nature of the deformity?
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Benraycamp0

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Re: Xiaflex with fibrosis (no peyronie)
« Reply #2 on: May 06, 2021, 11:59:02 AM »

Is there a difference between scar tissue, fibrosis, and Peyronie’s plaque? If so, what is the difference?
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26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Hawk

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Re: Xiaflex with fibrosis (no peyronie)
« Reply #3 on: May 06, 2021, 03:20:00 PM »

I don't think there is as far as the nature of the tissue is concerned.  I think the difference is more a case of the process that is driving it.  A scar is driven by a healing system that senses a wound and closes it. It does not close it with identical tissue as but with fibrous no elastic scar tissue regardless of where the wound is on the body.

With Peyronies Disease or keloids, or hypertrophic scaring the signal to stop at the edge of the wound does not work.  The body over runs healthy tissue with that same scar tissue.  It is then called plaque, adhesions, etc.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Benraycamp0

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Re: Xiaflex with fibrosis (no peyronie)
« Reply #4 on: May 06, 2021, 04:42:27 PM »

@Hawk:

I see. In that case then, it is possible for a penile injury to occur, where a normal (non-Peyronies) scar healing process takes place, which results in some deformity (because the scar tissue used is nonelastic).
Or am I misunderstanding?
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26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

BrettC

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Re: Xiaflex with fibrosis (no peyronie)
« Reply #5 on: May 13, 2021, 03:18:53 PM »

I am a little late to start a journal, because I am about to enter my 4th round of Xiaflex shots which pick back up a week from tomorrow on the 21st of May.  I am finding the first injection is usually easier than the second in each round.  Like the first as not too many side effects, but then that second one is when I see bruising and swelling. 

My doctor (Mohit Khera) in Houston spaces two Xiaflex injections out a week apart. Then two weeks no sex or masturbation, and after four to six weeks we start another round.  I have had a series of 3 rounds of two injections each. 

I have noticed early on after a shot I straighten up, but then as time passes the curve comes back.  I am not sure of progress... it seems better to me.  I started with a 65 or 70 degree curve upwards at my worst point.  I found penetration impossible.  But have managed to do it now a few times.

After this next round they will do a duplex and measuring of the curve, so I can tell you if there was any progress and how significant it is. I am curious.  I have read much on Xiaflex, and they told me not to expect much more than 20-30 degrees of improvement.  I would like to say I would be happy with about 30-35 degrees.  We will see...

More to come.
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50 years old
Diagnosed just over a year and a half with 65 degree upward bend
In my first round of treatments with Xiaflex
Using Restorex and oral medications as well (Pentox, Cialis)

Hawk

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Re: Xiaflex with fibrosis (no peyronie)
« Reply #6 on: May 13, 2021, 06:09:08 PM »

In that case then, it is possible for a penile injury to occur, where a normal (non-Peyronies) scar healing process takes place, which results in some deformity (because the scar tissue used is nonelastic).

That is EXACTLY correct.  All injured tissue anywhere on the body must heal and scar tissue is the natural healing process whether your arm, your internal organs or your tunica.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Benraycamp0

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Re: Xiaflex with fibrosis (no peyronie)
« Reply #7 on: May 13, 2021, 08:15:58 PM »

@Hawk:

If both can cause a deformity, I wonder how you distinguish that type of scarring from Peyronie's plaque?

Maybe that's what Dr. Levine's "slow healing wound" theory is trying to do.

I also spoke to Dr. Trost earlier this week regarding my case. He believes in multiple different subtypes of Peyronie's Disease - the two main ones we talked about were injury and genetic. He explained that, in his experience, injury-induced Peyronie's Disease is different than genetic Peyronie's Disease (or what he considers "true Peyronie's Disease"). If I understood him correctly, his explanation was that the injury-induced Peyronies Disease was usually much less severe, not as progressive, and was confined to the injury location. It wasn't unusual to feel no palpable plaques in these men and also for them to be younger (under 40).

Genetic Peyronies Disease (or "true Peyronies Disease") on the other hand, was usually much more severe and progressive. He explained that he has had teenagers or young adults come to his clinic with severe deformities with little to no recollection of injury. These men went on to have multiple curvatures or deformities (via "flareups") throughout their lifetimes. This is what he considers true Peyronies Disease.

There is another subtype he believes exists (which according to mainstream opinion is the most common) which comes from a combination of Erectile Dysfunction and age. I didn't get many details on this one since it didn't affect me personally, but I should email him and ask just to share what he says. I figured there was some correlation from the prevalence of Erectile Dysfunction and being prone to injury, but he does categorize it differently so maybe there's something else I am missing.

He also said that regardless of the cause of curvature (other than congentital), the treatment is exactly the same according to him: Traction, Xiaflex, Surgery. So he tends not to focus too much on the diagnosis part because, medically speaking, it doesn't change anything because to him the only question that matters is whether your current deformity is bothersome or not. If bothersome or progressive - treatment is warranted. If not bothersome or progressive - observation is warranted.

Another interesting thing he said was that there is current work being done in isolating the "Peyronies Disease gene". He mentioned there are two genes, and men should hope to do a blood test one day and figure out if they are susceptible to Peyronies Disease.

Note that this was a short part of the overall discussion I had with him, and I tried to understand and take notes based on what he described. He does mention these subtypes on his website though, but it would be nice to get him to write out a bit on the prognosis for each based on his experience.
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26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

GaussRifle

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Re: Xiaflex with fibrosis (no peyronie)
« Reply #8 on: May 13, 2021, 08:24:59 PM »

Interesting stuff. Alejeq I'm in the same boat as you. I have diffuse fibrosis on right side as evidenced in ultrasound and one nodule on the left side and I am undergoing xiaflex in both places. Tommorow is my second shot for first round injections. I would recommend to undergo it so ce we have nothing to lose. As you said your next step would be implant and I'm assuming your current penis is not in usable.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.
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