Another Email

Hi Peyornie's Disease Site.

I wonder if you can help? I was diagnosed last November with P.D. I am taking Potaba four times a day,with excellent results,do you know ,if I went to my doctor could he prescribe a traction device, or would I need to buy one.

Regards

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I'd say that traction is really picking up pace as an accepted treatment in the US and elsewhere due to the Levine studies. I can't honestly tell you that I've heard all that many reports or traction devices being prescribed in the UK yet though. It may be worth asking when you next have an appointment. Some doctors prefer solely oral treatments (potabo, and now pentox etc) rather than mechanical devices like traction, or VED. The top doctors in America tend to go with a combined approach though. When do you next have an appointment? I can search for links to the revelant traction studies if you like and you could print them off and take them to your GP.

Regards,

Peyronie's Disease UK

Peyronie's Disease Prevalence

Population-Based Study of Peyronie's Disease: Prevalence and

Abstract
Purpose.
To estimate the US prevalence of Peyronie's disease (PD) from patient-reported data and to identify diagnosis and treatment patterns.
Methods. 11,420 US males ≥18 years old completed a brief web-based survey regarding the presence of PD, past treatments, and penile symptoms (Phase 1). Phase 1 respondents with PD diagnosis, history of treatment, or PD-related symptoms then completed a disease-specific survey (Phase 2).
Results. Estimated prevalence of PD ranged from 0.5% (diagnosis of PD) to 13% (diagnosis, treatment, or penile symptoms). Thirty-six percent of Phase 2 participants reported that penile symptoms interfered with sexual activities. Of participants who sought treatment for penile symptoms (n = 128), 73% initially saw a primary care physician, 74% did not receive treatment from their first doctor, and 92% were not diagnosed with PD.
Conclusions. PD may be underdiagnosed/undertreated in the US. Improved awareness is needed of PD symptoms and treatment options among health care professionals. - http://www.ncbi.nlm.nih.gov/pubmed/22110491

This new study touches on the difficulty there is in estimating how many men have peyronie's disease. I've heard various suggestions of how rare peyronie's is over the years, but it's not something that's easy to measure. Many men don't ever seek an official diagnosis due to fear or embarrassment. Add to that this study, which reveals that even those who do seek medical attention are often not initially diagnosed with PD. As such they frequently remain untreated at a time where they would best respond to treatment. The study goes some way to suggesting that peyronie's disease is, rather predictably very often underdiagnosed and undertreated.

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.

New Combined Treatment Study

Combination of Penile Traction, Intralesional Verapamil, and Oral Therapies for Peyronie's Disease.

Introduction.  There is no current consensus as to the most effective nonsurgical therapy for Peyronie's disease (PD).

Aim.  This study aims to assess the benefit of penile traction therapy (PTT) when added to intralesional verapamil injections (IVIs) combined with oral L-arginine 1 g b.i.d. and pentoxifylline 400 mg t.i.d. in men with PD.

Methods.  Seventy-four men with PD completed 12 IVIs. Patients electing to add PTT were advised to wear the device for 2-8 hours daily and no longer than 2 hours per session. Subjective responses were measured using patient questionnaires. Stretched penile length (SPL) and erect penile curvature (EPC) using penile duplex ultrasound were measured. Response to therapy was defined as at least a 10-degree reduction in EPC.

Main Outcome Measures.  Change in SPL (cm) and change in EPC (degrees).

Results.  Thirty-five patients in group I vs. 39 patients in the PTT group II completed the protocol. Fifty-four percent of men in group II responded to therapy vs. 46% in group I (P = 0.75). Responders in group II had a mean EPC improvement of 26.9 degrees vs. 20.9 degrees in group I (P = 0.22). Mean PTT use was 3.3 hours per day, and men with >3 hours per day use gained 0.6 cm in SPL vs. 0.07 cm using less than or equal to 3 hours per day (P = 0.09), while men in group I lost 0.74 cm of SPL on average. Multivariate analysis revealed that duration of PTT use significantly predicts length gain (0.38 cm gain for every additional hour per day of PTT use, P = 0.007).

Conclusions.  There was a trend toward measured curvature improvement and a significant gain in SPL in men using the combination therapy protocol. Length improvement is related to duration of use of the traction device. Abern MR, Larsen S, and Levine LA. Combination of penile traction, intralesional verapamil, and oral therapies for Peyronie's disease- http://www.ncbi.nlm.nih.gov/pubmed/22024053

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 traction 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.

Go to pentoxifylline | traction

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)