Thursday, 24 November 2011

Recent Email

Dear Peyronies-disease.co.uk, I was diagnosed with Peyronie's Disease over 15 years ago. It was painful and I had a bent banana shaped penis. My consultant was at a loss as to what to do, but in the end suggested we try a course of ultrasound treatment - a 20-30min session once a week. It got better each week, and after about 6 treatments I was completely cured. The consultant, and I, were amazed at how well it had worked. I've been free of the problem until two or three weeks ago when I noticed a painful lump just over an inch from the tip this time. I know it's Peyronie's as the symptoms are identical, but rather than go through the slow process of GP referral and NHS waiting lists I've decided to buy one of the many ultrasound devices on sale these days, and treat myself. If it doesn't show improvement in a month I'll go to my GP. I hope this information is useful to you. Please reply if you need more information. Regards (Name Removed)

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Ultrasound treatment has a rather mixed performance with some people swearing by it, and others thinking that it's entirely ineffective. The author OF this recent email to the site seems rather pleased with it. I believe that it is, or has been, offered on the NHS for quite some time for the treatment of peyronie's disease. A brand new extracorporeal shock wave therapy study suggests that this type of treatment can help with pain and erection quality rather than plaque. It may be the case that whether or not this treatment is successful depends somewhat on when exactly it is carried out.

Saturday, 29 October 2011

New Combined Treatment Study

This brand new combined therapy peyronie's disease study throws up some interesting results. It certainly poses questions about Verapamil, which currently has a less than positive reputation amongst patients, online at least. With traction removed from the picture the treatment regimen rather worryingly appears to have resulted in a slight loss of stretched penis length. However there was a fairly significant reduction in curvature. Perhaps the main curvature causing plaques are being reduced in size, while there is a slight continuation in loss of elasticity throughout the penis.

Adding a penis extender resulted in a more significant curvature improvement and an increase in stretched length. This is a lesson already learned, as Xiaflex injections are also thought to be much more effective in conjunction with traction therapy - a process known as modelling. It's hard to gauge the effectiveness of pentoxifylline with these factors at play. I'd tend to fall back on results from previous studies, rather than draw any pentoxifylline specific conclusions here.

I think there are still some questions over how necessary verapamil injections are, when you consider that curvature improvements of this magnitude can often be seen in men using traction or ved therapy alone (without the need for painful injections). Also with traction you often see length increases too. That was not seen here when verapamil was done without modelling via traction.

Thursday, 27 October 2011

Peyronie's Disease Clinical Research

The company have since contacted me to inform me that they did not receive the contract to carry out this research, so I have removed identifying information. In this kind of thing happens again, I won't be featuring any future research studies, as it's just a waste of peoples' time.


Dear Administrator,

Please let me introduce myself, my name is (information removed)

We regularly work with pharmaceutical companies in exploring and understanding(s) the needs and experiences of suffers of various conditions. For clarity we are not involved in drug trials.

We have just been approached by one of our regular clients to look at and understand the patient journey of Peyronie’s disease amongst diagnosed and undiagnosed sufferers. In terms of symptoms experienced, medical care, impact on their quality of life. The research findings will be used to determine the likelihood of success for a new drug that could address Peyronie’s disease.

We would be looking to conduct 10 x 1 hour telephone interviews with suffers and in return they would be incentivised with a monetary reward.

I am writing to ask if you would be willing to contact, on our behalf, your subscribers/users of your website. Any traditional method of recruitment will not be feasible due to the sensitive nature of the conditions and the fact only 1.5% of the male population is estimated to have Peyronie’s.

We can supply evidence of our accreditation and can guarantee total anonymity for anyone who is willing to talk with one of our male researchers.

(Contact information removed)

Tuesday, 20 September 2011

PubMed

I have on occasion been asked how to locate the most recent studies relating to peyronie's disease and related conditions. I can certainly understand why men with the condition would wish to take a forward thinking view, so I'm happy to help out. I use PUBMED to keep up to date with new studies. It's the 'US National Library of Medicine National Institutes of Health' though it contains the latest research from all over the world. Searching for peyronie's disease terms can be useful in getting a feel for the treatments that work and what new treatments are in the pipeline.

Sunday, 4 September 2011

Hyperbaric Oxygen Therapy

There's an article on pubmed titled "Successful Treatment of Post Circumcision Glanular Ischemia-Necrosis with Hyperbaric Oxygen and Intravenous Pentoxifylline". The study isn't peyronie's disease specific but it's of interest nonetheless to see Pentoxifylline and Hyperbaric Oxygen Therapy being used together. In this particular case the combination is being used to treat penile tissue necrosis following on from a problematic circumcision.

There is one piece of anecdotal evidence hinting that Hyperbaric Oxygen Therapy might be of use to Dupuytren's Contracture sufferers (here). Between 10% and 25% of men with Peyronie's Disease have Dupuytren's Contracture and as such the conditions are thought to be linked. This whole Oxygen Therapy angle is probably something worth exploring in future studies.

Unfortunately at present only a spanish version of the study is available. When an English version appears I'll be sure to post it.

Thursday, 1 September 2011

PAV Cocktail Question


(The PAV cocktail is Pentox, L-Arginine and Viagra. It is sometimes used as a conservative oral treatment for peyronie's disease.)

"Hi,

Great site :)

Any ideas on the doses employed for the arginine (2-3g as above), pentoxyfylline and tadalafil combo therapy? Obviously not be construed as medical advice!

Also could you recommend physicians who employ this practice over here in the UK and would be able to advise. Some uro's are not at all informed on the state of research.

Is there no contraindication on the use of tadalafil and pentox. both being PDE inhibitors although with different specificities?

John
"


Taking 2g of L-Arginine daily is quite common, though I do notice that in terms of the PAV cocktail, it seems to be viewed as the least essential component nowadays.

Pentoxifylline is often taken 400mg x 2 or 3 daily, though one well known peyronie's disease specialist in the US is trialling 800mg x 3 daily. I doubt any urologists in the UK would currently suggests such a dose at this time though.

A recent study hinting at reduction in scarring (see here) when Cialis is taken daily, would suggest that this might be the better ED drug option, and not Viagra. However, many men seem to report slighly harder erections with Viagra, and of course the side effects are different for each drug too, so it all depends what works best for you. It's somethinG you should discuss with your doctor.

As several urologists prescribe both Cialis and Pentoxifylline it would appear that they are deemed safe to take together. I haven't heard of any problems in that regard. I wouldn't say that the PAV cocktail is widely known in the UK, but any urologist worth their salt should be willing to prescribe conservative oral therapies such as Pentoxifylline and Cialis. L-arginine is a non prescription supplement.

Sunday, 19 June 2011

Relationship between penile fracture and Peyronie's

It is often suggested that peyronie's disease can be caused by penile injury, and that does appear to be the case. This can sometimes be seen in cases of untreated penile fracture. In this study, we see that treated (surgically) cases of penile fracture rarely result in cases of peyronie's disease.

Of course a fracture of the penis is a medical emergency. On the other end of the scale, many men do not report any kind of injury to the penis, but still go on to develop peyronie's disease. It may be that a minor injury has occured which has resulted in the condiiton developing. There are various theories about "trapped inflammation", genetic susceptibility and the like, but each case of the condition appears to be quite individual, so it's all but impossible to know what causes peyronie's in every instance.

Thursday, 16 June 2011

Quick News

- Dr Lue has started prescribing 800mg x 3 pentoxiflyne to some patients. It has been said that better results are seen faster (especially in those with calcificulation)



- Positive noises regarding the UK Xiaflex study are starting to come out. One guy on the peyronies forum stated that he'd gone from 30 degrees to 18 after one course of treatment. Early days yet though. Hopefully more updates will emerge.



- Andropenis have launched a peyronie's disease specific traction device. I would think that it's more the instructions / treatment plan that differs than the device itself, but its positive that traction continues to be recognised as a viable treatment option.



- I noticed a movie mention of peyronie's disease in a review for Twelve Thirty. The score on imdb isn't particularly impressive, so I doubt many people will see it. Still, it's good to see that this condition is getting mentions outside of clinical environments.

Thursday, 2 June 2011

Collagenase (Xiaflex) Trial UK Update

Dear Peyronies-disease.co.uk,

We have been given the opportunity to screen a further ten patients for the Collagenase trial and although we had patients to fill these slots, two have pulled out and so there are two spaces going.

We are screening our next 8 patients tomorrow (3rd June 2011) with a view to injecting the first cycle on the 10th of June 2011. If there are any peyronies patients who are still interested in the trial, the spaces will be allocated on a first come, first serve basis and if they are able to fulfil the basic criteria. We would not expect the peyronies patients to come for their screening tomorrow as this is quite short notice, but we would be looking at screening them on Tuesday 7th June 2011 in the evening in time for starting treatment on the 10th June should they fulfill the criteria.

Any potential participants should email me on mandi@andrology.co.uk

Many thanks for your continued support from your website.

With kind regards

Yours sincerely,


Mandi Kayes

Lead Clinical Nurse Practitioner to Mr David J Ralph

Sunday, 22 May 2011

VED Clinic

For those of you in the UK who you wish to persue VED therapy, you may be interested in attending the VED clinic at UCLH. They follow the approach used in the UK VED study, demonstrating the model and advising how to use it and how not to. You are able to contact the VED clinic for advice anytime if you are having problems using it. If you have fit specific criteria (erectile dysfuntion etc), you may be able to get the VED for free on the NHS. If not, you'll likely have to pay for it. Your GP will decide. Either way, it's useful to have a support system in place.

You'll need to contact Dr Ralph at UCLH, London using the NHS Freedom to Choose scheme to take part. A referral from your GP will get the ball rolling.

As stated, the routine used here mirrors that used in the VED study:

"The VED device is to be used 2 x a day for 10 minutes each time. You are directed to pump up the penis and hold the erection for 20 seconds then releasing the pressure and starting over again."

It differs somewhat from the Chris Spivey Vacuum Therapy protocol, where three cylinders are used instead one one, and vacuum hold time is less. Word is that you've had good results at the UK VED clinic.

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?

Thanks,

S
-----------

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?

Thanks,

W
----

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.

Thanks,

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):
http://clinicaltrials.gov/ct2/show/NCT00812838?term=peyronies&rank=5

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: http://clinicaltrials.gov/ct2/show?term=peyronies&rank=1 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!
"

Saturday, 26 March 2011

Penile Implant Surgey Documentary

Award winning television production company Form Films are currently in talks with the BBC to make a documentary about Penile Implant Surgery. If you have personally undergone this type of surgery and are willing to share your experiences with Form Films please contact Larry at larry@formfilms.co.uk .

As was demonstrated in the peyronie's disease videos post (from Channel 4's Embarrassing Illnesses), it really is important for men out there to feel that they aren't alone. To see that others can come out of the other side of conditions such as this is really empowering and removes some of the concerns that many men in this position, no doubt share.

Just to allay fears that some peyronie's disease sufferers may have, penile implant surgery is primarily used in men with erectile dysfunction that fails to respond to all other treatments. It's not a peyronie's specific treatment.

Thursday, 17 March 2011

Peyronie's Disease Videos

Previously I posted video from Channel 4's Embarrassing Bodies of a peyronie's disease consultation, and follow up. Recently the show once again featured a segment on peyronie's disease. This time it concentrated on the actual surgical options and the procedure itself (so viewer discretion is advised). For those considering surgery it's really informative and I'm happy that Channel 4 has once again educated millions of its viewers about peyronie's disease.



*2012 Update* Below is another, more recent followup with the gentleman in the above video, as well as discussion with Dr Christian and his colleagues.


Here is a previous peyronie's disease video from 2009. It concentrates on the consultation itself, and the follow up:



On the occasions peyronie's disease has been covered on TV, it has resulted in a surgical resolution. The nature of the show is that a problem is identified, dealt with, and followed up on, in a reasonably short period of time. That doesn't really leave much scope for conservative options like oral treatments, mechanical methods, or coverage of men in the more active stage of the condition. You can also view our peyronie's disease images page for examples of how the condition can manifest itself in those suffering from it.

-More-

Urologist videos

Tuesday, 1 February 2011

Xiaflex

This is a quick (and positive) update to the previous post regarding the UK Xiaflex trials:


"There are no placebo's being used in this trial and every patient who is enrolled/ fit the criteria will receive four cycles (2 injections of collagenase per cycle depending on curvature measured at each cycle, six weeks apart). In total 8 injections potentially.

Many thanks again for including us on your site! We've already had a few potential patients email through.

Best wishes
Mandi Kayes
Clinical nurse practitioner to Mr David Ralph"

If the trials interest you, please register your interest ASAP at mandi@andrology.co.uk

Sunday, 30 January 2011

Xiaflex Trials (UK)

To whom it may concern,


A patient of ours has suggested emailing you some information regarding a new clinical trial for Peyronies disease.


This is a European Trial using Collagenase which will be due to start in Febuary once screening has taken place.


The main inclusion criterias include:


Men with Peyronie's Disease of at least 12 months and with a curvature between 30-90 degrees.


There are a number of other criterias that are stipulated for the trial but these will be discussed with the patients in more detail should they be interested in applying for the trial. The trial is "time intensive" with a number of visits to the clinic set over a 9 month period.


We would be grateful if you know any patients or of any followers of your forums that may be interested in participating in this trial. The patients may ring our office in Harley street on 0207 486 3805 or email myself, at mandi@andrology.co.uk for further information.


Many thanks


Yours sincerely


Mandi Kayes

Lead Clinical Nurse Practitioner to Mr David J Ralph

Thursday, 6 January 2011

Email - Pentoxifylline for congenital curvature

Dear Peyronie's Disease UK,

I have heard that pentoxifylline doesn't help with congenital curvature if there are similar symptoms, but no plaque. Is this true?

Best Regards,

B

----

Dear B,

Pentoxifylline helps to reduce inflammation and plaque. In the congenital condition there is no scarring to speak of so pentox is of no use. In one respect that's unfortunate, but with the congenital condition, you are at least in a position where the condition is totally stable, and suited to other therapies like traction (if it's minor curvature), and surgery. That you mentioned you have 'similiar symptoms' to peyronie's disease suggests to me that you should really try to get a diagnosis on what exactly is going on here. Maybe this is not a wholly congenital situation.

Thanks,

Peyronie's Disease UK