Modeling after Xiaflex

[Shane43]

Jan is simply summarizing what the medical evidence supports. The clinical studies on Peyronies Disease are few and not that well done, not the fault of the researchers so much as limited number of participants and inability to control all of the possible confounding factors. If you look at the reviews of possible treatments and international guidelines for treatments, there is some variation in recommendations but most are similar to the review cited below. I provide the conclusions section and attach the paper. Oral treatments like vitamin E and Co-Q10 are not harmful, and may even have other health benefits, so I take them as well. But there is only anecdotal evidence of their benefits.

Medical Management of Peyronie's Disease: Review of the Clinical Evidence
Patrick Teloken and Darren Katz

"A great number of medical treatments have been suggested and utilized in Peyronies Disease. Evidence from randomized controlled trial with regards to improvement in curvature exists for intralesional (with CCH and interferon alpha-2b) and traction therapy. Oral therapy has not proven to be effective and due to potential side-effects and costs, is not currently recommended. Topical verapamil with or without EMDA is not recommended and novel topical agents need further studies prior to routine use. An optimal treatment algorithm applying a multimodal approach is yet to be defined. With advances in the comprehension of the mechanisms of inflammation and scarring and the development of new agents, it is expected that more effective treatments for Peyronies Disease will become available."

These two papers (also attached) are a little less enthusiastic about Xiaflex, but seem to simply be noting the uncertainty of how it will work for every patient.

Contemporary surgical and non-surgical management of Peyronie's disease
Recent advances in managing Peyronie's disease

This last paper "Minimally invasive therapies for Peyronie's disease: the current state of the art" (also attached), concludes:

"The optimal minimally invasive therapy for Peyronies Disease likely involves a combination of non-surgical therapies. Further investigation into particular combination therapies, including oral anti-inflammatory agents, CCH, and PTT,
may reveal a synergistic therapeutic effect. Nonetheless, surgery offers the highest success rates for men with chronic-phase Peyronies Disease who desire rapid return of a functionally straight erection."

All of these papers were published in the last 2 years and are from highly qualified medical researchers at very good medical schools. None of them note any conflict of interest with manufactures of Xiaflex, traction/VED, or any other therapies.

They are not saying that the many therapies discussed in this forum do not or cannot help, but that there is no good evidence that they work. I realize that not everyone has access to Xiaflex or is a good candidate for this drug, but it does appear to be the best non-invasive treatment (with reasonably good controlled clinical studies to support it) used alone or in combination with traction.

And from my personal experience, after three series of injections, it has made a very big improvement of my hourglass indentation and penis stability, albeit with some pretty bad bruising and pain, but well worth it.

[Shane43]

Sorry that my above message is a bit out of place on this topic of "modeling", but I thought I would write a more complete response.

[MFPC Trost]

Going back to the original post, modeling is absolutely critical to getting a good outcome.  In the original phase IIb study, men who didn't model had no improvement, while those who did experienced benefits.  We have been adjusting our modeling technique over time, and our median improvements with Xiaflex have almost doubled from when we first started.  There are a lot of considerations with Xiaflex injections though to optimize outcomes and minimize complications.  We put together a video on this to highlight many of the things that we've learned since first doing these injections in early 2014. 

[nemo]

Dr. Trost, welcome to the Forum, we're pleased to have you join us!

Regards,
Nemo

[GaussRifle]

We are very pleased to have Dr. Trost with us indeed !

As far as modeling after Xiaflex is concerned, I typically feel scared doing modeling with hand because it's tough to maintain pressure and apply the right force. Is it reasonable to skip hand modeling as long as you are daily doing modeling with RestoreX twice a day and expect curve improvement  ?

[Bak]

I am posting an update about my Xiaflex injections + manual and RestoreX manipulation

This was my previous medical history

Name: Bak
Date: May 16, 2022
Level of calcification (if any): mild/low level of calcification
Result: Neutral
Number Of Shots: 8 (4 cycles of 2 shots each, every 6 weeks)
Doctor: James Kashanian, NYC
Modeling: Self, manual and via RestoreX
Summary: Each cycle was made of 2 injections a week. I had 4 cycles in total, each cycle every 6 weeks. The curvature measurement were made prior the first injection of each cycle, in the doctor office. To measure the curvature, I received a medication (injection) to stimulate erection, and the measurement was made with erect penis.

1. Prior to my 1st cycle the curvature was 55 degree, pointing upward.
2. At the beginning of the 2nd cycle, the curvature had worsen to 65-70 degrees. I also developed a bruise after the 2nd injection of this cycle, but not big deal, it went away in one week with no complications
3. At the beginning of the 3rd cycle, the curvature was 55 degrees again.
4. At the beginning of the 4th cycle, the curvature was 45 degrees. I developed a bruise after the 1st injection of this cycle which then went away in a week with no complications.

I am now waiting a few weeks and doing only manipulation with RestoreX and will then decide whether to continue with more Xiaflex injections or not.

Two months after the end of the 4th cycle my curvature was back to 55 degrees. Basically the same as when I started the therapy - no improvement whatsoever. Furthermore, around the same time, another nodule/plaque appeared on the right side of the tip. The doctor said it may be caused by the use of RestoreX so he told me to stop using it and only do manual manipulation. He suggested Xiaflex injection to dissolve that. I did two more injections on that plaque. The nodule dissolved quickly but it developed hourglass which caused a bending also towards the right (initial curvature was 55 degree upward).

The second injection of Xiaflex within this cycle also caused ematoma and huge swelling. I had intense pain for a week, double checked with the doctor which said it is one of the possible reaction to the medication. Two months after this injection I still have some swelling and pain during erections.

The experience was really bad and, overall, I have seen no improvements with Xiaflex + RestoreX so I decided to stop this therapy which comes with some not-negligible risk.

Be safe guys.