Friday, 22 April 2011

Interview with Dr. Tom Lue (video)

Click here to watch the video (no embed option available).

This video is a peyronie's disease specific discusssion taken from a longer interview with Dr Tom Lue. Dr Lue is a renowned peyronie's disease expert and professor of Urology at UCSF in the US.

In this clip Lue mostly discusses the ongoing collagenase (Xiaflex) clinical trials. He touches on how the treatment works, possible complications and briefly mentions how stretch treatments like traction can be used alongside it.

He also states that men with calcification issues (who would otherwise not be suited to this treatment) may be able to reduce or eliminate that problem by use of pentoxifylline, and how pentoxifylline may also slow or stop progression in those with early peyronie's disease.

Thursday, 21 April 2011

Email - Vitamin E

I'm currently taking Vitamin E as it was suggested to me by my doctor. Is this a good starting point as a peyronie's disease treatment?



Dear S,

Vitamin E isn't going to do you the world of good. There are positive oral treatment studies in relation to peyronies for:

Pentoxifylline (prescription drug)
COQ10 (supplement)
Acetyl-L-Carnitine (supplement)
Cialis (prescription drug)

Also, there are positive studies for the VED and traction.

Of the oral treatments I would say that pentox is the most essential treatment. Top urologists prescribe it, and it really is something I think you should take for a year +. Positive studies for COQ10 and cialis are more recent but I wouldn't let that put you off. You might get more out of oral supplements if your condition is recent, but that's not to say you can't benefit if you've been a longer term sufferer. Being pro-active now might result in a preventative effect of sorts. There's nothing peyronie's disease specific I have to back that up. However, in pentoxifylline studies for other conditions this has been the case.

Wednesday, 20 April 2011

Email - Verapamil

I live in the UK and am in my twenties. I have Peyronie's Disease and would like more information on getting Verapamil treatment in the UK. My doctor has stated that surgery is an option but I told him that I'm very apprehensive about that. Are there any other suitable options out there for me?



Dear W

I'm not sure of your best bet with regard to verapamil treatment in the UK. My feeling is that it's more popular in the states. Treatments like traction and VED are becoming more accepted in the UK though, as is use of the drug pentoxifylline (often in conjunction with these treatments). Surgery has helped many men with peyronie's disease, though I can appreciate why, at such a young age you would be keen on seeking out more conservative treatments first.

To a large extent the type of treatment will depend on the severity and stage of your condition. If curvature is minor, conservative treatment options might be suitable. The same applies if it's an 'active' condition (if you've had it for a period shorter than 12 months, or if there is still pain etc).

There are Xiaflex trials occuring right now in the UK. While, you've missed the boat in terms on the first run, but it's a treatment that may well prove to be more promising than Verapamil injections. It's possible that you are refering to topical Verapamil treatment and not injections. The topical treatment doesn't have a very good track record at all I'm afraid. If you're interested in the UK Xiaflex trials, keep an eye out for updates regarding any future trials.


Peyronie's Disease UK

Sunday, 17 April 2011

Botox Clinical Trial

I receive a fair few emails asking about clinical trials and in the past there hasn't been an awful lot to report. However regular readers will know that there is some excitement around collagenase (xiaflex) studies that are currently ongoing. I will of course keep you posted on when new places open up on these trials.

I mostly concentrate on the UK in this blog, but looking at the analytics stats reveals that many US visitors find their way here too. As such, I will attempt to offer details regarding US studies too as it is bound to be of use to some of you.

With that in mind I thought I'd pointout that there is a Phase II Botox study in Texas that is still recruiting at Baylor College of Medicine,
Houston, Texas (according to the study page):

Please check out the page thoroughly to see if you meet the inclusion criteria. From a personal perspcetive, I'm unsure of how Botox would be helpful to peyronie's disease sufferers, but I'm placing it here anyway, as it's worth exploring all options and informing visitors of all current opportunities of this kind. The AA4500 (Xiaflex) study is also still listed as recruiting on the site: so it might be worth contacting them for further information.

Tuesday, 12 April 2011

Collagenase Study Update

I've contiued to receive interest regarding the UK Xiaflex study mentioned on the site a couple of months back. I sent a follow up email and can confirm that the recruit quota has now been met. If/when further places open up I'll let you know via the site.

The reply:

"We are up to our full quota of recruits for the study now and I would like to say a big thank you to you and your website as we had an excellent response from potential people. Unfortunately, due to the strict exclusion criteria and the amount of subjects we can recruit there were a few people we haven't been able to include.

We may at a later stage be allowed to recruit more subjects, depending on how the other Uk sites have managed. I will let you know if this should happen!

Best wishes and again many thanks for your help with putting the word out there!