Suggested algorithm and treatment path for Peyronies, by Dr. Landon Trost

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Pfract

https://malefertilityandpeyroniesclinic.com/peyronies/treatments/

Guys... i just stumbled across this on Dr. Trost´s website and i think everybody should have a look on it. It outlines what it is recommended, what works and what doesn't and as a lot of people know he is very reputable. He even includes in the page the current guidelines on the treatment of the condition from the leading American urological association. Simply outstanding!


I think this post should be a sticky and shown to every newcomer here. What's your say?

Benraycamp0

Yup, I've seen this before on his site. I really like it! In general, the other pages on his site also has great content about how Peyronies Disease is diagnosed, what causes it, etc.
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.

Nolte94

He writes, that oral therapies aren't an option. I disagree with that, because I have good results with a multimodal treatment and Tadalafil helped me extremely.
I would recommend VED, too, because it "cured" my hinge problem.

Just my thoughts, but it doesn't exist many studies on any treatment option. "Attacking" the disease from many sides seems good to me.
26 years old, first symptoms since August 2020, 45° bend to the left, hinge effect and pain at the beginning
‐---
Daily Tadalafil
Traction with PMP
VED with one cylinder
Acetyl-L-Carnitine, Tensiologes, Coq10 and healthy food
----
Only 5-10° left 🥳

Mikel7

He tends to go on concrete studies with data to look at.  It is true that many men taking these supplements seem to improve.
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

Snash

other than 2015, i don't see a date - do you know how current it is? particularly with regard to oral treatments ? thanks
57 yrs old. developed Peyronies Disease Nov 2020 following botched (excessive skin removed and rotation of glands) circumcision in 2016, penis now also shorter, thinner (beyond the bend), twisted and bent upwards around 45 degrees. going to try restorex

porterrobinson

this might as well be 1970 because research interest is so low it doesnt even matter what year
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Pfract

Guys... There are a couple of resources online from Dr Landon. From webinar's to video clips,  articles and medical papers. He is a very knowledgeable doctor. This information came from his website, which you both can check out and also you can fact check the sources. He mentions the most up to date guidelines from the American urological association, and also is experience in dealing with the disease.  

Alex83

Following my previous message deleted here......
I contacted Dr. Trost, he clearly answered all my questions but one thing puzzled me, here is what Dr. Trost told me following an email exchange:

"Yes, congenital curvatures can actually be treated similarly to Peyronie's Disease (i.e. Xiaflex, traction, or surgery are all options)."

But also:

"That's correct.  We've been treating men with congenital curvatures with Xiaflex since it came out.  We haven't ever published the results (there was a resident working on it at Mayo, but I think he must have lost interest, and we just have too many other papers we need to publish / knock out).  The results are similar to Peyronies Disease."

So he claims that it is possible to treat a congenital curvature with Xiaflex, knowing that these injections are done in a plaque for the treatment of peyronie, not having a plaque.... I remain really perplexed knowing that Doctor Trost is it seems a recognized doctor. This is the first time I've heard this

27 yo

- 01/2020: Nesbit surgery for a 50 degrees downward curvature with Dr.Faix (FR) : bad result

- 12/2022 : Surgery correction with Dr.Gelman US

- Now : Indentation on the left dorsal side with a rotation to the left that appeared, try Restorex

porterrobinson

this sounds not right as the ethiology is totally different. in congential curvature you do not have any fibrous plaque tissue but instead it is thought that during development the tunica on one side is just shorter than the other, due to androgen influenece or whatever. so when there is no fibroid, how would collagenase even work. traction i could maybe imagine as there will be more traction force on the shortened end of the penis and it may lengthen to appropriate lengths. but xiaflex does not make any sense. maybe you can follow up on that with him
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

AverageBloke

This is really interesting. I think it may be because some people with congenital curvature may have a thickened tunica/tissue. Maybe the xiaflex can soften it and allow for modelling of the curve?

You should ask Dr Trost as to how exactly could xiaflex help someone with congenital curvature.
Peyronie's Disease
Titan Touch 22cm - Dr Clavell 06/04/22

GaussRifle

The resident doctor at Mayo Dr Trost is talking about is My Doctor. When he told me this I was shocked myself,  but it's true.... they have been treating congenital curves with Xiaflex lately with positive results. The new theory is that xiaflex helps remodel the collagen and men with congenital curve while having no plaque do still have more collegenous material on the side of the curve. It is important to note that even normal healthy tunica has some collagen in it.

They now treat xiaflex as a "surgical knife" and is independent of etiology. This is how my doctor at Mayo put it. By the way my doctors name at Mayo Clinic Rochester is Dr. M J Zeiglemann. You will see his name on all the papers published by Dr Trost.  
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.

Pfract

This was very informative Gaussrifle! Thank you for sharing!  

GaussRifle

Yeah no problem.... I just find it sad that this fda approval process is so slow. I recognize it's for human safety but seriously they can make it quicker. Did you know collegenase injections (Xiaflex) were first used somewhere around 1980's but wasn't made available till 2014. Imagine all the people that could have benefited from it and avoided unnecessary surgery.

Same thing is happening with congenital curve, many people could have avoided shortening plication surgery while not all for severe cases.

I firmly believe we already have a better treatment out there existing, like nanocapsule. Encapsulated collegenase which has been shown to much more effective than free collegenase ( like Xiaflex ) due to its longer enzymatic activity inside the body for upto 10 days as opposed to 1 to 2 days from Xiaflex . In animal models the efficacy was almost twice as good. But the paper was just published in 2021 this year.... Who knows when this will be approved .... Maybe next 10 years whereas we could have taken advantage of it now !!!!  
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.

Benraycamp0

That is super interesting that Xiaflex can be used successfully on congenital curvatures. I too was always on the impression that one of the tubes of the penis was shorter which caused the curvature.

If Xiaflex can be used successfully, certainly traction might be worthwhile on its own - especially for those who have 25-40 degrees curvatures and just need to reduce it a bit to make sex more comfortable?
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.

Alex83

Here is what Dr. Trost told me about Xiaflex for a congenital curvature:

"Xiaflex dissolves two types of collagen, which is the tissue which lines the erectile tissue (tunica).  The erection part of the penis is similar to sausage, where there is a hard outer lining (tunica) and the softer inner material (smooth muscle, vessels, etc.).  Plaque is made of this same tissue but is just thicker and more irregular.  So, Xiaflex is able to dissolve the tunica, whether or not there is a plaque present.  It's nice though because it spares vessels, nerves, smooth muscle, and other important structures.  

That's good to know.  We haven't been able to do a study of congenital men.  You never know for sure about something without a well done study, but anecdotes are definitely better than nothing."



Xiaflex allows the destruction of a part of the tunic on the side of the penis to make it straight, a loss of length must surely be considered I guess

Also he explained to me that if I did traction, I should do it against the sutures to avoid causing too much tension, which is what I did!


To conclude, I don't think I will try Xiaflex because as he told me, he can't provide me with any study on Xiaflex for congenital curvatures while this treatment remains expensive.
And for traction, I think Restorex is only sold in the US.......

27 yo

- 01/2020: Nesbit surgery for a 50 degrees downward curvature with Dr.Faix (FR) : bad result

- 12/2022 : Surgery correction with Dr.Gelman US

- Now : Indentation on the left dorsal side with a rotation to the left that appeared, try Restorex

GaussRifle

Did Dr Trost tell you xiaflex causes loss of length ? If so, did he say this for both congenital and peyronies ?
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.

Alex83

No unfortunately did not tell me if Xiafex made you lose length

I forgot to publish the message he sent me about statistics on the use of Xiafex on peyronies and congenital curvatures

He has no official study yet, he was supposed to publish one 6 months after our email exchange (we spoke in July)

I am waiting for his study because I am very sceptical about Xiafex for congenital curvatures


His message
"     Introduction: Congenital penile curvature is a relatively uncommon condition characterized by penile angulation.  Similar to Peyronie's Disease (Peyronies Disease), this condition has historically been managed with various surgical techniques.  Given the efficacy of Collagenase Clostridium Histolyticum (CCH) in men with Peyronies Disease, our team has elected to treat men with CPD with CCH injections.

Objective: To describe outcomes of CPD men treated with CCH injections and to compare against a traditional Peyronies Disease cohort.

Methods: A prospective database has been maintained of all men undergoing CCH injections by our team since Jan 2014.  The specific CCH administration protocol has been modified over time and currently includes combined use of RestoreX traction therapy, sildenafil, 0.9 mg of CCH diluted into 0.7 ml, injections performed at the point of maximal curvature, and aggressive manual modeling.  Curvatures were measured in two planes (dorsal and lateral), with the combined measure reported as a composite.  Outcomes were reported based on the most recent curvature assessment obtained minus baseline.  Men were included if they received at least one series of CCH injections and had at least one baseline and follow-up curvature assessment available.

Results: A total of 272 men comprised the current cohort, with 23 exhibiting CPD and 249 Peyronies Disease.  Mean age was higher in Peyronies Disease men (57.4 vs 38.4, p<0.0001), and mean Peyronies Disease duration was 18 months in Peyronies Disease men.  Median baseline curvature was non-statistically higher in Peyronies Disease (65 vs 55 degrees, p=0.06).  Baseline curvature directions for Peyronies Disease and CPD, respectively were: dorsal (82% vs 35%, p<0.0001), lateral (58% vs 78%, p<0.05), ventral (11% vs 35%, p<0.01).  Following treatment with CCH, median curvature improvement was similar between cohorts, with 20 degrees (IQR 5, 35) for Peyronies Disease and 20 degrees (IQR 5, 30) for CPD, p=0.62.  Percentage improvement from baseline was non-statistically higher in Peyronies Disease men (33% vs 29%, p=0.99).

Conclusions: Treatment of CPD men with CCH is a viable therapeutic option and provides similar benefits to those observed in men with Peyronies Disease.     "
27 yo

- 01/2020: Nesbit surgery for a 50 degrees downward curvature with Dr.Faix (FR) : bad result

- 12/2022 : Surgery correction with Dr.Gelman US

- Now : Indentation on the left dorsal side with a rotation to the left that appeared, try Restorex