New Clinical Algorithm for Peyronie's Treatment

[QuackAttack]

I just came across this clinical algorithm that came out in December 2015. Hopefully this will be helpful for people that haven't sought any treatment yet. I found it interesting that they said don't offer Vitamin E or Omega 3 fatty acids with L-carnitine, yet they don't say why. I take Omega 3-6-9 every day for heart health. I would like to know if it interferes with Pentox or other oral treatments. My doctor was very positive about L-carnitine.

https://www.auanet.org/common/pdf/education/clinical-guidance/Peyronies-Disease-Algorithm.pdf

[Pfract]

Thank you for posting this link! it's information like this, quality wise, that people should strive to post. In my opinion. Couldn't come from a more reputable source.

Should we as a community follow their guidelines when counseling new forum members? as showing them, this pdf?

[Gutted]

Yes, interesting. No mention of Pentox either

...and I agree ....... the L-Carnitine negative was concerning. I think we all read the paper where ACETYL-L-Carnitine was claimed to give reasonable results after 6 months to some of those on the trial. I am taking the ALC course myself and Omega 3 and Vit E were already part of my health supplement intake prior to developing Peyronies anyway.

This PDF does refer to Propionyl-L-Carnitine however, not Acetyl- . As you say, no comments as to why and if it is the specific combination with Vit E and Omega 3 that is the issue....

[LWillisjr]

I like the article and it is a good summary. In fact I think it is completely in line with what we here on the forum have been recommending for some time based on specialist and collective input. Point 5 does state that anti-inflammatories can be prescribed.

5. Clinicians may offer oral non-steroidal anti-inflammatory medications to the patient suffering from active Peyronie's disease who is in need of pain management. (Expert Opinion)

And Pentox falls in this category. So I think it is consistent with what we have been trying to say all along. Just at is says this is a great "pocket resrource". And did you notice it is supported by Endo Pharmaceuticals?

Les

[skunkworks]

I disagree completely. It is thinly veiled advertising and misses out very useful treatments, while including ones that have very little evidence backing them, such as intralesional verapamil and interferon.

VED?
Traction?
Coq10?

It essentially says 'give them Xiaflex'. What a shock, that a paper sponsored by Endo (pharma company which owns Xiaflex) says Xiaflex is essentially the only treatment one should be using. Then 'oh maybe intralesional verapamil if you want, even though the evidence is very weak'.

What this will achieve is more doctors without enough experience in injection and modelling with Xiaflex, just going ahead and trying it anyway. This will do more harm than good, mark my words. I have little doubt we will see far more new members appearing creating 'xiaflex ruined my penis' threads in the near future.

The more Xialfex results and experiences I read about, the more obvious it becomes that how the injections are administered matters hugely for the end result, as does the modelling post injection. Injections should be ultrasound guided and done by someone with experience in the specific procedure. The above pocket guide will guarantee the opposite of that happens, instead we'll see more doctors attempting it with less experience.

[Pfract]

The doctors might not have it, but they will get it if they administer it. And do you know that the American association of urology is one of the most, if the not the most important one there is?  And this was told by my doctor in Portugal. That and the European one.  So, don't dismiss it...  

[skunkworks]

And do you know that the American association of urology is one of the most, if the not the most important one there is?

Appeals to authority are logical fallacies.

As stated above, the pocket guide does not include treatments with a lot of evidence backing them yet does include treatments with very little evidence backing them. On top of that it essentially posits Xiaflex as the #1 first treatment of choice, which is not surprising as it is sponsored by the makers of Xiaflex. Xiaflex is very new, the techniques in injection and modelling are nowhere near refined enough, and results have been mixed. It does not have enough of a treatment history to be considered the #1 first choice treatment, and should not be used before other less invasive and less risky treatments have been tried. Dependent on the patient situation of course.

So yes I can dismiss this pocket guide.

I'll go even further actually. I could write a safer, more effective and far more evidence based treatment guide in a day.

[Pfract]

I dare you to go ahead, and create one. I am sure the community will benefit from it also. You have logic in what you say...  

[Gutted]

5. Clinicians may offer oral non-steroidal anti-inflammatory medications to the patient suffering from active Peyronie's disease who is in need of pain management. (Expert Opinion)

And Pentox falls in this category.

Hmmm .... I'm not sure whether this was a stab at my earlier post in this thread, however I took Pharmacology as my University degree and went on to do a Masters !

I didn't recall Pentoxifylline being classified as or acting as a NSAID. I just double-checked it's classification, which is : Hemorrheologic and more importantly, it's Therapeutic Class is : a Hematologic.

The pain reduction some Peyronies Disease sufferers get from Pentox is a side-effect and does not mean Pentox is a NSAID, which it is not.

Therefore, respectfully, as I said in my post below, the American Association of Urology PDF below does not even mention Pentox, even indirectly, through suggesting NSAID's for pain management under section (5.). If you did not know about Pentox / Peyronies this PDF would not in any way point you in that direction ..... even if you looked at at the full list of NSAID's in the most recent Pharmacopeia you would not arrive at Pentox

[LWillisjr]

Absolutely not a stab at anyone, I never meant to imply it was a NSAID. Only as an anti-inflammatory and I know it can be prescribed as such.

Like other methylated xanthine derivatives, pentoxifylline is a competitive nonselective phosphodiesterase inhibitor[19] which raises intracellular cAMP, activates PKA, inhibits TNF[20][21] and leukotriene [22] synthesis, and reduces inflammation

[LWillisjr]

It essentially says 'give them Xiaflex'. What a shock, that a paper sponsored by Endo (pharma company which owns Xiaflex) says Xiaflex is essentially the only treatment one should be using.

I do agree it quickly jumps to Xiaflex. And VED's are only weakly mentioned under point 18 along with surgery. And yes there is no mention of traction. So each of these could have a lot more detail behind them. My point is the very first time I went to my first urologist and was told 'there is nothing you can do'....... I would have welcomed him handing me this pocket guide with a list of options I could then go research on my own.

[skunkworks]

Yeah that is a fair point, at least the condition is getting some attention from the medical world, even if it is sub-optimal.  

[Jonbinspain]

I spoke at length with Dr Keuhhas about the psychological effects of Peyronies. It's something he feels strongly is grossly underestimated by the global urological community, and should be taken into far greater consideration.

Hopefully, it will be. Sooner rather than later.

[skunkworks]

This is a much much much better info resource - http://sci-hub.io/10.1016/j.urology.2016.02.009

[postrocker]

The doctors might not have it, but they will get it if they administer it. And do you know that the American association of urology is one of the most, if the not the most important one there is?  And this was told by my doctor in Portugal. That and the European one.  So, don't dismiss it...

Could you please let me know the name of your doctor in Portugal?
Thanks.