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Author Topic: Running out of Options  (Read 2237 times)

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welshwales

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Running out of Options
« on: August 27, 2014, 09:31:39 AM »

I saw my uro this week to discuss further options following ultrasound and an exam by another surgeon who has been treating Peyronies Disease patients for 30 years. I got pretty crappy news, although I was expecting it so not really a surprise. Essentially my Peyronies Disease is aggressively progressive, with seven significant plaques and more developing.
I was told my Peyronies Disease is inoperable because it is so unstable. I can't use pentox due to severe gastric problems, and have been advised to steer clear of many of the supplements for fear of complications with my other medications. So I'm left with low dose cialis and VED therapy.
I've been told that once xiaflex is cleared for use in the EU in 2015 they can attack the non-calcified newer plaques. Other than that I'm not sure what else I can do. Am I missing something?

Oh and I've been referred to an Erectile Dysfunction specialist for further investigation into that aspect of the disease.
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james1947

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Re: Running out of Options
« Reply #1 on: August 27, 2014, 05:32:38 PM »

Sorry to read your post, hope Xiaflex will be cleared for use in Europe soon.
By the way, some forum members had success with Xiaflex against calcified plaques also.
I would search for some Pentox substitute some members mentioned on the forum to stop the progression.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

UrsusMinor

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Re: Running out of Options
« Reply #2 on: August 27, 2014, 09:57:10 PM »

Hi, Welsh--

If it's not too personal--though what could be more personal than this disease?--what supplements have you been advised to avoid, and which drugs do they fear interaction with?

Supplement 'interactions' is an area where I distrust doctors.

 
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Cal30

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Re: Running out of Options
« Reply #3 on: August 28, 2014, 01:27:19 AM »

Is PRP therapy something you've considered? What about a penile prosthesis? (I know a prosthesis is not an attractive option for any of us, but it is a last resort that works satisfactorily to treat Erectile Dysfunction about 90% of the time.)

Cal30
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NeoV

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Re: Running out of Options
« Reply #4 on: August 28, 2014, 03:43:58 AM »

Manual stretching (or traction) nearly cured me of all my symptoms. Don't take VED therapy and traction lightly! I'm sorry to hear about your frustrations.

aazmaish

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Re: Running out of Options
« Reply #5 on: August 28, 2014, 04:40:46 AM »

Hi Neo .
i live where traction device / Ved is a real NO no. still could not find after all efforts .
i have started oral supplements. (pentox/L arginine / Ch Q-10& cialis) ..
pls guide me how to do manual stretching ( till the moment i get a traction device ) .
i have a plauque measuring one inch long (tiny balls .. in broken shape ) .. from 4 " penis has shrunk to 3" when erected . i have up upward curve wd 60 ° wd right side turn. starting from the midle of the shaft .. (peyronies started approx 4 months ago ) .
pls guide for technics for manual stretching ..
thanks in advance .
aazmaish


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welshwales

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Re: Running out of Options
« Reply #6 on: August 28, 2014, 04:42:33 AM »

Ursus, it's the AEDs (anti epileptic drugs)  and other neuropharmacological medications I take for associated comorbid disorders which pose the problem. It's not due to evidence of interactions, it's the lack of evidence of safe use. The danger is that untested supplements might interfere with the efficiency of said medications leading to more severe or increased frequency of seizures. I know a large part of advice from med professionals is to protect their own backs, but I find myself very cautious because my seizure control is tenuous at best.

Neo, I use my VED daily (well, most days) and I have found it to be helpful in the six months or so I've been using it. I've regained about a 3rd of lost length and a considerable proportion of girth. What stretching techniques do you employ?

Cal30, PRP isn't currently available for Peyronies Disease in the UK on the NHS, although my uro did say that might change in the not too distant future. Paying for it privately is not an option unfortunately.
Regarding implant, that is something I will be discussing with the Erectile Dysfunction specialist once the referral has gone through, but as a final last chance option. Hopefully the xiaflex will be cleared for use in June '15 as is the current projection.
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UrsusMinor

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Re: Running out of Options
« Reply #7 on: August 28, 2014, 02:55:40 PM »

Yeah, you're in uncharted waters with anti-seizure drugs and supplements!

Have you used low-carb (or at the extreme, ketogenic) diets to try to help with the seizure threshold?
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