Monday, 28 September 2009

Media Coverage

Peyronie's Disease hasn't really ever had its '15 minutes of fame', so the opportunity to increase knowledge of the condition on a mass scale is yet to be realised. Mentions are few and far between, though the condition has started to receive some media attention in print and on television in recent years. Check out the links below:

Channel 4 - Embarrassing Illnesses - Perhaps that most prominent UK coverage of peyronie's disease features on Series 1 of Channel 4's Embarrassing Bodies. This Channel is popular with young people and I'm pleased that many thousands of people will have now heard about peyronie's disease through watching this TV program.

Preventing penile fractures and Peyronie's disease - A newspaper article emphasising preventative action. Includes some words from Dr Lue.

Middle age threw me a wicked curve - This article is, in my view, slightly alarmist:

And the fourth, and most drastic (option), is surgery. "But I warn you," said the doctor, "you'll lose two or three inches. No more Peyronie's, but no penis, either."

This of course is not a very common situation, as there are surgical options such as grafting which can in many cases retain whatever length the long side of the penis is. Of course if the whole penis is smaller due to scar tissue, then that length cannot be recovered through surgery.

Daily Mail Article - A good article from the perspective of the patient and the consultant detailing a man's experience with surgery for peyronie's disease . The "Peyronie's disease affects more than 80,000 men in Britain" claim is a little off though in my view. Add another zero and you're probably getting there.

Thursday, 24 September 2009

Media Attention and Public Awareness

There is a distinct lack of public awareness of peyronie's disease. In many ways we live in a very sexualised age, but that openness doesn't really extend to sexual health problems. The inbuilt or cultural embarrassment when it comes to talking about such issues is very evident. Just ask the average person to name characteristics of various sexually transmitted diseases. They most
likely won't be able to tell you a great deal. It's not as if the information isn't out there, so there is a "ignorance is bliss" element to this, as well as a "it won't happen to me" mindset. Another sexual health issue, erectile dysfunction, is still something that people titter about, and the true magnitude of it only really came to light once there was effectively a solution available for many men (cialis, viagra, levitra). Often people only start talking about a problem when the solution hits the market.

Peyronie's disease is perhaps the epitome of this inability to talk. Sufferers often don't talk because they are embarrassed or ashamed, and peyronie's isn't really as 'daytime TV friendly' as other health concerns so media attention is somewhat lacking. To compound this peyronie's disease is an orphan disease so there's no great push from within the medical community to get things moving either. Awareness and momentum falls short in just about every area you can think of. If somebody asked me to say what the public perception of peyronie's disease is, I'd simply say "there isn't one". It's ironic in a sense though, because it's certainly a very memorable condition (speaking from experience). Once people do hear about peyronie's disease they do not tend to forget. That, I suppose is a good thing for when awareness does eventually increase.

Really it is simply asking too much that the general public educate themselves when they have no real need or motivation to do so. A push for recognition has to happen through either the media, the medical community, or from themselves sufferers. Perhaps elements of all three will eventually align at some point to shine a light on this problem. The nature of media is to push boundaries, and to look for something new. Combine that with advancements in medicine and an ageing population (since peyronie's disease tends to affect older men) and I do believe that knowledge of the condition will eventually be much more widespread.

Tuesday, 22 September 2009

Xiaflex for Peyronie's Disease

There has been much discussion here of treatments currently available, but not really much of an eye towards the future. Xiaflex is one potentially promising peyronie's disease treatment that is worthy of discussion.

Xiaflex is an injected treatment designed to soften and break down existing scar tissue, through its ability to destroy collagen. The result of this process (a series of injections) can be a reduction in curvature. It is thought that combining Xiaflex with traction may be useful in maximising its effectiveness.

In a related condition Dupuytren's Contracture, Xiaflex has been very effective as this study clearly shows:

BACKGROUND: Dupuytren's disease limits hand function, diminishes the quality of life, and may ultimately disable the hand. Surgery followed by hand therapy is standard treatment, but it is associated with serious potential complications. Injection of collagenase clostridium histolyticum, an office-based, nonsurgical option, may reduce joint contractures caused by Dupuytren's disease. METHODS: We enrolled 308 patients with joint contractures of 20 degrees or more in this prospective, randomized, double-blind, placebo-controlled, multicenter trial. The primary metacarpophalangeal or proximal interphalangeal joints of these patients were randomly assigned to receive up to three injections of collagenase clostridium histolyticum (at a dose of 0.58 mg per injection) or placebo in the contracted collagen cord at 30-day intervals. One day after injection, the joints were manipulated. The primary end point was a reduction in contracture to 0 to 5 degrees of full extension 30 days after the last injection. Twenty-six secondary end points were evaluated, and data on adverse events were collected. RESULTS: Collagenase treatment significantly improved outcomes. More cords that were injected with collagenase than cords injected with placebo met the primary end point (64.0% vs. 6.8%, P < 0.001), as well as all secondary end points (P < or = 0.002). Overall, the range of motion in the joints was significantly improved after injection with collagenase as compared with placebo (from 43.9 to 80.7 degrees vs. from 45.3 to 49.5 degrees, P < 0.001). The most commonly reported adverse events were localized swelling, pain, bruising, pruritus, and transient regional lymph-node enlargement and tenderness. Three treatment-related serious adverse events were reported: two tendon ruptures and one case of complex regional pain syndrome. No significant changes in flexion or grip strength, no systemic allergic reactions, and no nerve injuries were observed. CONCLUSIONS: Collagenase clostridium histolyticum significantly reduced contractures and improved the range of motion in joints affected by advanced Dupuytren's disease. ( number, NCT00528606.) 2009 Massachusetts Medical Society -

Unfortunately though peyronie's disease and dupuytren's contracture do have some similarities, there is also an important difference. With Dupuytrens the scar tissue is attached to the underlying tissue, and this attachement can be loosened and then broken with the use of Xiaflex (and other surgeical options). In peyronie's disease there is no such attachment and as such there is not such a simplistic solution. The hope with peyronie's is that the tissue itself changes in composition and regains some of its former qualities (elastisity etc).

The current clinical trial results for Auxilium's Xiaflex are located here:

As you can see, it has been somewhat successful in reducing curvature but the results are not exactly mindblowing. It's worth taking into account though that more results will be available in future, and the process will be fine tuned somewhat. It's feasible that for some men, the use of Xiaflex could potentially be the difference between needing surgery and not, so I believe that it has its place in the treatment of peyronie's disease.

Auxillium do not plan on seeking FDA approval for Xiaflex for peyronie's disease until at least 2011.

Friday, 18 September 2009


The studies here refer to taurine being used to treat inflammatory processes as well as fibrosis. It may not translate to peyronie's disease, but it appears to be useful in lung, liver and pancreatic fibrosis in rats. This does not necessarily mean the same level of success will transfer across to humans for even these conditions, but we can only go on the information we possess.

[Taurine inhibits deposition of extracellular matrix in experimental liver fibrosis in rats]

To study the effect of taurine on liver fibrosis and its mechanism. METHODS: Fibrosis was induced by the administration of carbon tertrachloride(CCl4) in rats. Some of the animals were treated with taurine. The rats were killed after 12 weeks of CCl4 treatment. Depositions of type I, III and IV collages, laminin and hyaluronic acid were studied in liver sections by immunohistochemical technique using specific antibody. The hepatic contents of type I, III procollage and tissue inhibitor of metalloproteinase-1(TIMP-1) mRNA were determined by Northern blot hybridization. RESULTS: A significant elevations of hepatic collagen I, III, IV, laminin and hyaluronic acid were observed after 12 weeks of liver injury in animals without taurine treatment, and a definite increase in the amounts of hepatic type I, III procollagen and TIMP-1 mRNA was noted. Taurine prevented increases in type I, III procollagen mRNA expression as well as the accumulation of the collagens, laminin and hyaluronic acid in the liver. CONCLUSION: The data indicate that taurine has a protective effect in CCl4-induced hepatic fibrosis. The results suggest taurine might be of potential value in clinical practice.

[Oral administration of taurine improves experimental pancreatic fibrosis]

BACKGROUND AND AIM: The mechanism of pancreatic fibrosis is unclear. Taurine is used in the clinical treatment of a wide variety of diseases, but its effect on improving pancreatic fibrosis is unknown. We examined whether a diet with added taurine improves pancreatic fibrosis induced by dibutyltin dichloride (DBTC) in an experimental chronic pancreatitis rat model. In addition, we examined the influence of taurine on pancreatic stellate cells. METHODS: Pancreatic fibrosis was induced by DBTC. Rats were fed a taurine-containing diet or a normal diet and were killed at 4 weeks. Pancreatic stellate cells were isolated from male Wistar rats. Cultured pancreatic stellate cells were incubated with or without taurine chloramine. Type I collagen and transforming growth factor-beta1 secretion was evaluated by ELISA, and matrix metalloproteinase activity was assessed by gelatin zymography. Interleukin-6, interleukin-2, and transforming growth factor-beta1 levels in the supernatants of pancreatic tissue homogenates were measured. RESULTS: Pancreatic fibrosis induced by DBTC was improved remarkably by the oral administration of the taurine-containing diet. Taurine chloramine decreased type I collagen, transforming growth factor-beta1, and matrix metalloproteinases 2 of the pancreatic stellate cell culture supernatant. Increased interleukin-6 and decreased interleukin-2 were found in the supernatants of the pancreatic tissue homogenates of DBTC-induced pancreatitis rats compared with other groups. CONCLUSION: The oral administration of taurine improves pancreatic fibrosis. Taurine chloramine inhibits transforming growth factor-beta1 produced from activated pancreatic stellate cells and improves pancreatic fibrosis.

[Taurine attenuates radiation-induced lung fibrosis in C57/Bl6 fibrosis prone mice]

INTRODUCTION: The amino acid taurine has an established role in attenuating lung fibrosis secondary to bleomycin-induced injury. This study evaluates taurine's effect on TGF-beta1 expression and the development of lung fibrosis after single-dose thoracic radiotherapy. METHODS: Four groups of C57/Bl6 mice received 14 Gy thoracic radiation. Mice were treated with taurine or saline supplementation by gavage. After 10 days and 14 weeks of treatment, TGF-beta1 levels were measured in serum and bronchoalveolar lavage fluid (BALF). Lung collagen content was determined using hydroxyproline analysis. RESULTS: Ten days post radiotherapy, serum TGF-beta1 levels were significantly lower after gavage with taurine rather than saline (P = 0.033). BALF TGF-beta1 at 10 days was also significantly lower in mice treated with taurine (P = 0.031). Hydroxyproline content was also significantly lower at 14 weeks in mice treated with taurine (P = 0.020). CONCLUSION: This study presents novel findings of taurine's role in protecting from TGF-beta1-associated development of lung fibrosis after thoracic radiation.-

I certainly wouldn't suggest taurine as a primary treatment for peyronie's because there are much more established oral treatments out there such as the PAV cocktail (Pentoxifylline, L-Arginine and Viagra). However, it may be of use as part of a wider regime. It's certaily not something I'd dissuade anybody in early stage peyronie's disease from taking.

A note of caution, beta-alanine and carnosine are known to induce taurine deficiency, so if you are taking those supplements, you may need to factor that in.

Wednesday, 2 September 2009

Viagra vs Levitra and Cialis

As many peyronie's disease sufferers have erectile dysfunction, use of phosphodiesterase type 5 inhibitors such as Viagra are common. Even where ED is not present there is an argument for use of PDE5 inhibitors alongside a more comprehensive oral treatment regime. We see this in early stage PD treatments such as the PAV cocktail (Pentoxifylline, L-Arginine and Viagra).

Over the years the number of erectile dysfunction options has expanded from Viagra, to new additions Levitra and Cialis. For a compairson, check out the below chart:

There's really not much to seperate any of them in any real sense and patients tend to stick with whatever treatment they start with. Viagra has a good track record behind it, but as Cialis has such a long half life (resulting in its "weekender" reputation) that would probably be the best option to start with. If the drug works against PD via multpiple mechanisms it's surely best to have it in your system for as long as possible. If reducing ED is the primary benefit, then still it helps to be able to gain a full erection on demand, rather than specifically have to prepare for it.

The Erectile Dysfunction Observational Study (EDOS) is a 6-months observational prospective multicentric study enrolling men with erectile dysfunction (ED) who asked, to be started on a treatment or to change a previous treatment. Aims of the study were to analyse the pattern of treatment and compare the efficacy of treatments used. Patients were enrolled during a normal hospital visit and were prescribed a treatment for ED. They were asked at baseline and after 3 and 6 months, to answer a set of questions from the International Index of Erectile Function, Erectile Dysfunction Inventory of Treatment Satisfaction (EDITS) and Short Form of the Psychological and Interpersonal Relationships Scale questionnaires (SF-PAIRS). Clinicians were free to prescribe any therapy for ED available in the market, and to change therapy at any time during the study. Out of 1 338 patients, available for analysis at 6 months, 624 (47%) changed their treatment during the study and 714 (53%) continued with the drug prescribed at baseline. Patients assuming tadalafil had a significantly higher probability of maintaining the same treatment compared to sildenafil or vardenafil. There was no clinically significant difference in terms of efficacy, patient satisfaction, self-confidence and spontaneity between the different inhibitors of PDE5. The 'time concerns' domain score of SF-PAIRS, was statistically better in patients assuming tadalafil. In conclusion sildenafil, vardenafil and tadalafil show similar efficacy in the clinical practice. However, patients receiving tadalafil display a lower risk to discontinue or change the treatment.Asian Journal of Andrology advance online publication. 24 Augest 2009; doi: 10.1038/aja.2009.48. -

(For reference: Tadalafil = Cialis, Sildenafil = Viagra , Vardenafil = Levitra)

The above study echoes the thought that there's not much between the various options, though it does state that "patients receiving tadalafil display a lower risk to discontinue or change the treatment", so again this is probably a good starting point. Should it not work for you, then you always have Viagra and Levitra to turn to. Also, remember that cutting pills in half or quarters may be a good way to find a dose that is most appropriate for you.

Tuesday, 1 September 2009

Penile Implant Surgery

In the peyronie's disease surgery post, I failed to go into detail about penile implant surgery. This type of surgery is suited to men entirely unable to gain a useable erection despite trying all available ED treatments. It is primarily an ED issue, though of course many men with peyronie's disease also have ED so it's relevant here too.

Penile Implant Surgery is typically seen as a last resort, but perhaps that term does it a disservice. The surgery involves an implant being fitted which gives the patient the ability to once again gain an erection (via use of a inflated bulb and release valve). I'm sure the thought of all of this fills some men with dread, but the satisfaction rates are high and it effectively gives you back your sex life (and well as a straight looking penis).

The most advanced impant is the AMS 7000 LGX. An image and explanation can be located here. There are older models but it makes sense to go with the latest technology and materials where possible. There are different types of implants (semi rigid , inflatable, 3 piece etc) each with their own pros and cons.  Respected penile surgeon Tom Lue would probably be my first port of call if I required an implant.

Check out the penile implant blog to get an idea of what the results look like.