Wednesday, 8 December 2010

Email - Peyronie's Disease Concern

Dear Peyronie's Disease UK,

I first discovered or heard about peyronie's disease around 2 months ago. I noticed a bend out of nowhere after a particularly stressful week and researched on the internet. For the first month I went into a state of shock and didn't do anything about it apart from worry as it seemed no one could help. I started taking VIT- E 400mg, Potaba (6 a day). MSM sulphur and using other herbal remedy's such as knotgrass which apparantly improves elasticity in tissues also using VIT- E oil, started quite regimented but of late have been very hap-hazard.

I found my urologist to be very friendly, he has put me forward for a MRI scan on the NHS. However I still feel very frustrated at the lack of any kind of schedule to stick to, it just seems there's a make it up as you go along approach. I'm aware your e-mail is there mainly for people to contribute rather than advice but i'm only 25 and just seem to be going round in circles.

Given my age, nature and stage of my condition assuming it could be peyronie's, what would you recommend? Looking back I have always suffered some kind of ED without ever really doing anything about it, would the PAV cocktail and VED be a good option? If so what kind of dosage would you recommend? Also whats the best dosage of VIT-E. Would you suggest taking VIT-C as well?

Would be a great relief to hear from you even if its just a message to repeat whats on your site. Its great to see someone like yourself taking positive action.

Best Regards,

C


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Hi C,

It is very hard to know how the condition will develop at this stage since you're only two months in. In some men the condition will remain stable, in others it will worsen, and in a lucky few it is thought to spontanesouly resolve. I would say that in six-ten months if your condition is the same as it is now, it's quite unlikely to worsen. I say this because urologists usually wait around a year before considering surgery. With the right treatment approach, you can hopefully stack the odds in your favour.

The PAV cocktail is used by Dr Levine and Dr Lue. Both world renowned in the field of peyronie's disease. The most effective part of the PAV cocktail is pentoxifylline. I posted a study which is perhaps the most promising peyronie's disease oral treatment study ever (not as though there is much competition for that title! - aside from the new COQ10 study). It's certainly not a miracle cure, and in some men no oral treatments will help, but the study suggests that pentoxifylline can help to stop progression of the condition in many men, and can improve the condition of some. It's a prescription medication (as is the Viagra part of the cocktail). The 'A' in PAV cocktail, L-arginine is available from health stores like Holland and Barrett and is very cheap.

I don't think Vitamin C will be of most use, so personally I wouldn't bother to take it. I'm not convinced that Vitamin E is very useful either, but it has been stacked with Pentoxifylline in some fibrosis studies, so perhaps it serves a purpose in that combination. A full spectrum vitamin E might be a better option than one from a local chemist. This kind of thing.

I wouldn't dissuade you from going the VED route. A multi pronged approach can pay dividends. Traction has also been demonstrated to reduce curvature somewhat in a study from a year or two back. There's not really a right way or wrong way to approach treatment, but while the condition is still active is makes sense to channel your efforts in a positive fashion.

Thanks,

Peyronie's Disease UK

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