Thursday, 17 December 2009

Xiaflex Phase IIb Results

Xiaflex is once again on our radar as the Phase IIb results are out.

It has to be said that the results to me do not seem to be impressive. Using a needle on the penis of a peyronie's patient no doubt holds some risk in its own right, so I feel that the results would have to be more impressive to get me to consider Xiaflex as a valid treatment option.

Of course it may well be that in conjunction with other treatments, such as trental, the effectiveness of Xiaflex is more apparent. It may also be the case that in the time before approval (possibly 2012) skilled doctors will learn to better use Xiaflex injections to reduce curvature. There will possibly be opportunities for some to try the treatment before 2012, due to its success in treating Dupuytren's Contracture, but if these results are anything to go by, I can't say that I'm eager to be at the front of the queue.

Thursday, 12 November 2009

Pentoxifylline Study Update

Last week I posted an abstract from a new and rather exciting pentoxifylline study. Well thankfully the study is now available to be viewed click here. It's very detailed pdf document, but is a fascinating read. I would advise you to take the study to your urologist if he does not appear to be keen on prescribing pentoxifylline.

Some of the doctors involved in this study (Mohammad Reza Safarinejad etc) have carried out other peyronie's disease studies in the past, using Omega 3,vitamin E and propionyl-L-carnitine. None of these studies have had positive outcomes. In a sense I'm not disappointed by that fact though, because it shows that there is a genuine curiosity to find out what works and what doesn't for peyronie's disease, and not a desire to push a specific outcome.

If I had a wishlist, I'd quite like to see:

- Another study solidifying these findings
- A PAV cocktail study
- A study on men with very long term peyronie's (5 years+) to see if there is any difference in impovement rate
- A similiar study to this but with 400mg taken 3 or 4 times daily, instead of twice daily
- A two year study (this study suggested that the improvements gradually and constantly increased during treatment period. It'd be good to see where the end point of those improvements is. Looking at pentox use for other conditions it could be 6 - 12 month).

This pentoxifylline study really is good news, and for those very recently diagnosed there may een be additinal benefits not seen in this study. It's certainly not a cure, and it doesn't work for everyone, but pentoxifylline does appear to hinder progress of the disease in most men, and bring about noticable improvements in some.

Monday, 9 November 2009

Penis Tissue Replaced in the Lab

Of course in the here and now, potential peyronie's disease treatments five or ten years down the line might not be music to our ears, but the long game is a valid one. There are treatments that effectively offer hope in the short term (such as the PAV cocktail), VED / traction use, treatments on the horizon such as Xiaflex, and surgical options. An interesting article from the BBC News website, detailing the process of creating new erectile tissue in the lab.

As peyronie's disease seems to differ for each individual, with varying degrees of worsening/improvement/pain and so on, it's useful to existing sufferers to have the hope of new developments in the pipeline. Young people especially, are very likely to benefit from developments such as these in coming years. Keeping an eye on future animal trials will no doubt be in our interest.

Knowledge in relation to peyronie's disease has been embarrassingly lacking for so very long, and while there is still much to be known, it's heartening to see various potential solutions and advancements making their way towards us.

Tuesday, 3 November 2009

New Pentoxifylline Study

In recent years pentoxifylline has been suggested as a peyronie's disease treatment. Top urologists often suggest the PAV cocktail (Pentoxifylline, L-Arginine and Viagra), though in many instances the push to get pentoxifylline recognised as a valid treatment option is patient rather than urologist driven.

Take a look at this study.


Until recently pentoxifylline studies had been very thin on the ground. In fact, to the best of my knowledge this is the first study as such (other than a previous case study on one man, and seperate comments made by Dr Lue). The study, shows that while it may well not be the 'answer' to peyronie's disease, pentoxifylline IS likely a useful treatment for those with early chronic Peyronie's disease. It doesn't help everybody, but when you consider the lack of other available oral options, it is the right path to take. More research is needed to confirm these findings, but make no mistake, this is good news, and hopefully urologists to take note.

The jury is still out on the extent that pentoxifylline helps those with well established peyronie's disease, but a study relating to breast cancer posted here previously does suggest that it's a possibility, and certainly worth giving it a try.

Researching Peyronie's Disease

Medical developments and breakthroughs happen all of the time and although peyronie's disease isn't exactly at the forefront of such progress, it pays to keep your finger on the pulse. It is of course sad that PD doesn't receive the attention that it most certainly deserves, but knowledge gained in areas relating to inflammation and scarring all help us to piece together the puzzle that this condition is, and gives hope that peyronie's disease will one day be a thing of the past.

The Xiaflex trials are ongoing. Over the next year or so, we should start to get a firm idea of whether it will be recognised as a viable treatment for peyronie's disease. Keep an eye on their press releases here.

The peyronie's forum offers a patients perspective and anything new on the horizon in relation of treatments finds its way here in no time at all. Keep an eye on the developmental drugs, alternative treatments and oral treatments boards for the latest thoughts and findings.

There are a handful of patient run peyronie's blogs/sites, some of which in my view are very negative. One of the few I do enjoy reading is Cure Peyronie's. It's updated with new editions a few times a year, and every update is very detailed and enlightening. The latest update relates to 'prostate cancer and peyronie's disease', and in my view is a must read for all men. An eye opening read to say the least. The previous update centered more on future developments.

Those in the anti-aging community attempt to find ways to combat age related issues. As inflammatory processes are at the core of many conditions and diseases, developments here may apply directly to peyronie's disease inflammation. The immInst.org forum is well worth checking out for the latest buzz on supplements (and dietary matters) which may apply to sufferers of peyronie's disease. The supplements board and Resveratrol sub-board are especially interesting. The website anti-aging firewalls, is also very detailed and very relevant.

Last but certainly not least is the National Center for Biotechnology Information site. Here you have access to the very latest research. Using the search feature intelligently by searching by condition, treatments, characteristics and so on, can sometimes lead you to into making treatment choices and/or somewhat educated leaps of faith. That afterall is what pentoxifylline was/is.

Wednesday, 14 October 2009

Superoxide Dismutase

Superoxide Dismutase holds interest in the treatment of peyronie's. Admittedly some studies have been more promising than others, but as part of a well rounded approach to attacking peyronie's disease, I can see logic in adding it to a treatment regimen. A "topical gel containing liposomally encapsulated recombinant human superoxide dismutase" mentioned in a couple of articles in relation to peyronie's disease isn't commercially available, but a Superoxide Dismutase supplement is (from iherb in the form of a dietary supplement called S.O.D).

An enhanced verison of Superoxide Dismutase from 'Life Extension' called GliSODin appears to be the most bio-available oral version at our disposal. (Wikipedia entry)

As stated previously taurine may be a useful addition to the peyronie's arsenal, and it does appear that taurine raises superoxide dismutase levels, so maybe it is useful in part due to this mechanism. Type "taurine" and "Superoxide Dismutase" together in http://www.ncbi.nlm.nih.gov/sites/entrez to see countless instances of this. (As an aside: If you take Taurine, you may want to add Niacin, as a few studies involving both have demonstrated success in various fibrotic conditions).

As it seems that the injectable version is out of reach, and to be honest the idea of repeatedly injecting substances into a peyronies penis probably isn't a great idea under most curcumstances anyway. Still, maybe the enhanced oral bioavailability version can be a good conpromise. Adding an oral version to a regime seems like a safe bet since it has anti inflammatory and anti fibrotic properties in a number of conditions. Without a full understanding of the ins and outs of peyronie's disease, the best appraoch is likely one that covers as many bases as possible.

Friday, 9 October 2009

Long Term Pentoxifylline Treatment / Rebound Effect

I do think that if people are going to go the pentoxifylline route, there is good reason to stick with it for quite some time. One study relating to breast cancer radiation treatment which resulted in fibrosis, showed that stopping pentoxifylline treatment too soon resulted in a rebound effect in the condition (http://www.ncbi.nlm.nih.gov/pubmed/16260695). Another recent study in rats with radiation induced heart disease shows the same thing: http://www.ncbi.nlm.nih.gov/pubmed/19306752

Interestingly, the first study relating to superficial radiation-induced fibrosis suggested that progress can be made with pentoxifylline over a period of years. Admittedly the biggest improvements are made over the first 6 months, but in the long-term useage group, patients continued make slight improvements for upto two years. This is something that goes against the "six months" recommendation of some urologists.

Of course we cannot state that fibrosis in peyronie's disease behaves the same as in other conditions, but improvement over years combined with the rebound effect issue suggests that if pentoxifylline does appear to be working for you at six months to a year, continuing to use it may ensure that the improvements stand the test of time. Of course if there is no improvement at one year, then the case for taking it is much less robust. I'd make an exception for that if the condition is still active though (inflammation still present), as that suggests that plaque formation is either actively occuring or is further down the line. In those with plaque present for many years, the breast cancer study does appear to suggest that in those cases, pentoxiflline can take much longer to show promise.

If you're new to peyronie's disease, it's important to know that getting on top of this condition in the very early stages is a very wise decision, and pentoxifylline should be part of that process. I cringe when I hear people say that their urologist proposes a "wait and see" approach. What exactly is to be gained from that?

Reminder: Pentoxiflynne has worked well with L-arginine and Viagra (or levitra/cialis) in animal models, and tends to be the oral treatment put forward by some of the leading urologists.

Saturday, 3 October 2009

Peyronie's Disease Forum

When my life was first impacted by peyronie's disease, there was no internet, well at least not for the majority of us. With no way to connect with other sufferers, an extra layer was added to what was already a very difficult situation to come to terms with. In 'real life' urologists are not always the most understanding people, because they are simply are not trained to deal with the mental anguish that can often accompany this condition. A partner may not always be able to understand where you are coming from either, and it may be difficult to confide in family and friends.

The peyronie's disease forum has become something of a psychological sanctuary for many men. It's a forum for sufferers of peyronie's disease with almost 3000 members and many more observers. The discussion driven emphasis on the experience of the patient is something that is quite unique and leads to valuable infomation quickly filtering through (such as who the best urologists are, the latests takes on treatment options etc). I certainly recommend checking it out, if only to take a look around and view the contributions of others.

It would of course be good to see more local people (as in United Kingdom residents) contributing their experiences with urologists, the NHS in general and so on at the PD forum. Sharing local knowledge can benefit all sufferers, and learning from the experiences of others is something that we should certainly aim to promote.

Click HERE to check out the peyronie's disease forum!

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 salon.com 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. (ClinicalTrials.gov number, NCT00528606.) 2009 Massachusetts Medical Society - http://www.ncbi.nlm.nih.gov/pubmed/19726771


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: http://www.auxilium.com/ProductPipeline/PeyroniesDisease.aspx

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

Taurine

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.
-
http://www.ncbi.nlm.nih.gov/pubmed/10572688

[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.
- http://www.ncbi.nlm.nih.gov/pubmed/17764527


[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.- http://www.ncbi.nlm.nih.gov/pubmed/19609640



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. - http://www.ncbi.nlm.nih.gov/pubmed/19701217?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum


(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.

Friday, 28 August 2009

Natural ways to treat Erectile Dysfunction

Low testosterone levels appear to be linked to the severity of the curve in peyronie's disease (See: Testosterone deficiency). Of course correlation does not imply causation, but even if this link comes to nothing, many men with peyronie's disease do suffer from ED. Should you wish to attempt to address this issue with a natural approach I have a suggestion for boosting testosterone levels, based on the below study.

- A combination of five herbal extracts (Panax quinquelotius (Ginseng), Eurycoma longifolia (Tongkat Ali), Epimedium grandiflorum (Horny goat weed), Centella asiatica (Gotu Kola) and flower pollen extracts) was demonstrated to be comparable to the effects of sildenafil citrate. The study is recent and was carried out on rats, but there are various reports of Tongkat Ali and Horny Goat Weed combatting ED in humans, so this combination may well be worth trying. I've seen a few studies relating to Tongkat Ali raising testosterone levels. Check out the study below - http://www.ncbi.nlm.nih.gov/pubmed/19494825

Of course not all ED problems relate to low testosterone levels, far from it. Therefore there are various other approaches worth trying if your T-Levels are fine:

- L-arginine (see L-Arginine) alone has the ability to combat ED, but for many men it is insufficient. In combination with pycnogenol though, it is much more effective. The synergy between l-arginine and Pycnogenol appears to significantly increase the effects of l-arginine on either atime related or dose relates basis, depending on how you read this. - http://www.ncbi.nlm.nih.gov/pubmed/12851125

- A new study on diabetic men suffering from erectile dysfunction (due to vascular damage and the role of metabolic factors) suggests that propionyl-L-carnitine, L-Arginine and nicotinic acid (Ezerex) help to combat erectile dysfunction. They appear to be somewhat more effective when used with an inhibitor of 5-phosphodiesterase such as Levitra. On the IIEF5 scoring system (http://ts-si.org/files/IIEF-5ScoringSystem.pdf) the most effective version of the treatment showed an increment of 5 points, which in my view means that it's a good option for many men suffering from ED - http://www.ncbi.nlm.nih.gov/pubmed/19624286

Thursday, 27 August 2009

Dr David Ralph

Dr David Ralph is perhaps the best known peyronie's specialist in the UK and is part a practice called Andrology on Harley Street, London. He has written extensively on peyronie's disease and respected urologist Dr Lawrence Levine holds him in high regard. He is the biggest implanter of penile prostheses in the UK and also carries out less drastic peyronie's surgery.

A copy of his CV is here: http://www.andrology.co.uk/cv/David-Ralph-CV.pdf

As there appears to be a certain lack of community in the UK regarding peyronie's disease and reporting experiences, I feel that this is a good opportunity to contribute. If you're a current or previous patient of Dr David Ralph please do contact me with your experiences. Please include as much detail as possible such as:

What kind of treatment you received or are receiving (oral treatments, surgery etc)?

What was your route to treatment (private or NHS)?

If you had surgery what procedure did you receive and was it a success?

Was your overall experience good or bad? Why?

Please also include a contact email if possible.


Your contributions will make the process of seeking help less daunting for other men. Much of the worry about seeing a urologist relates to the unknown, and reading experiences of others will at least ensure that you have a more rounded patient centric view of what to expect.

If you have experiences with another urologist, feel free to get that info to me too. I'll be posting writeups of other doctors, and may compile a list or directory of experiences if I get enough interest.

Saturday, 22 August 2009

Surgery

In cases where curvature is significant (usually indiciated by the ability to comfortably have sexual intercourse), some men choose to undergo a surgical procedure. Surgery should not be considered where the condition is not entirely stable, as further changes to curvature post surgery will negate undergoing surgery to begin with. As a general rule, you should be painfree for six months and not undergoing further physical changes before you consider this option. Waiitng 9-12 months would not be unwise.

There are several different approaches to sugery and the condition of your penis typically dictates the procedure you will undergo. Plication is typically carried out on men with a less prounced curve, and the grafting surgeries are more suited to men with curves over 40 degrees.

Plication - This is typically seen as a less invasive and more straightforward surgical option than others, and involves shortening the convex side of the curvature (so essentially not touching the scarred side at all). It involves placing stitches opposite of the PD scar resulting in the penis being straightened, or thereabouts. This type of treatment cannot treat bottleneck or hourglass deformaties, it is used to treat simple curvature. As with many procedures, improvements are made to the procedure over time. This is true of plication, and Dr Lue's 16 dot technique, is a slightly updated version of the procedure.

Incision and Grafting and Excision and Grafting - With "Incision and Grafting", shallow incisions are made in the scar tissue. This is done to open up the plaque somewhat. A graft (autologous or synthetic) is used to effectively patch up these incisions. In "Excision and Grafting" the scar tissue is actually removed and replaced, again with a graft. With grafting satisfaction is typically high, but for a minority of men erectile dysfunction can become an issue, as well as loss of sensitivity. There are various oral treatments for ED though, and for many men these are effective.

Penile Implant Surgery - For cases where erectile dysfunction is not helped by testosterone injections, viagra and other ED treatment options, penile implant surgery may be the only available route.

Depending on the surgery in question, loss of length may occur during the procedure. Therefore some men attempt to minimise this by using a traction or vacuum device for several months in order to stretch the scar tissue and reduce curvature somewhat before undergoing surgery. In much the same way, men often use vacuum therapy after surgery in order to exercise the penis and reduce any scar tissue and ED issues that may develop post surgery.

Vacuum Therapy Protocol

For those wishing to use the VED to reduce curvature, it would be sensible to use a tried and tested system. The Peyronies Protocol (aka Multi-Cylinder Vacuum Protocol) is a multiple vacuum cylinder approach designed by Chris Spivey, of Urology Centers of Alabama, to treat peyronie's disease. You can see the reasoning behind its use here: VED Therapy.


I want to state that it's important not to have unrealistic expectations. This type of therapy will not work for all men, and some of those it does work for will have to stick at it for many months in order to see results. Do not over pump, else you will do more harm than good. Pressure does not need to be excessive, and there is no benefit from doing so.


The multi cylinder VED approach is used to stretch the peyronies scar is different ways. The small cylinder is more adept at stretching length, the large at girth, and so on. The protocol itself is 26 weeks long, but should you reach the end, there is no harm returning to week one and going through the whole process again.

Spivey on the site peyroniesprotocol.com recommends that each daily session should consist of ten cycles of these four steps:

a) Create negative pressure around the penis
b) Fill the space inside the cylinder and hold a "straight" erection for 5-10 seconds
c) Release the negative pressure in the cylinder
d) Repeat the cycle ten times to complete one daily session

If pain occurs you should of course stop the session and rest. Done correctly and without excessive pressure this is a good approach. Vacuum Therapy and Traction Therapy are the two mechanical methods of treating peyronie's disease. While they're unlikely to cure the condition as such, they can reduce curvature and improve sexual functioning. Aims which should be the primary concern of all peyronie's patients.

Wednesday, 12 August 2009

Links


Induratio - An established peyronie's disease site for our German friends. The site has English and French translation options too.


Dupuytren's Disease Site - Duputren's disease is a condition related to peyronie's disease. If you suffer from it, this is the go-to site.


Cure Peyronie's - A site where the author details the latest peyronie's disease developments.

Pentoxifylline

Over recent years Pentoxifylline (aka Pentox, Trental) has emerged as a treatment for peyronie's disease. Where some other treatments have come and gone, pentoxifylline does at least appear to be helpful to some men, and has been useful in various other conditions where fibrosis is an component. There have not been many peyronie's specific pentoxifylline studies carried out as yet (aside from this case study), but results in animal studies caused a decrease in PD plaque and collagen/fibloflast ratio, so there is logic to choosing this as a treatment option.

Trental is usually taken in three daily 400mg doses, each seperated by 8 hours. The treatment is typically combined with l-arginine and sometimes viagra. This approach is used by the likes of Dr Levine and Dr Lue, both of whom are respected in urologists. Dr Lue noted that "We have noted regression of calcified chronic plaques in over 50 men treated with 6 months of pentoxifylline". Pentoxifylline downregulates collagen expression, reduces proinflammatory and increases antiinflammatory response so I'm of the believe that for those with peyronie's, the earlier you start taking it the better. Pentoxifylline is oftens used alongside  L-Arginine and Viagra as part of the PAV cocktail.

Further information including a .pdf file of the recent pentoxifylline study here.

Saturday, 8 August 2009

Viagra

Many peyronie's disease sufferers have problems attaining a firm erection (or an erection of any description). Some find sex uncomfortable due to the extent of the curvature, or pain present, but for others ED (erectile dysfuntion) is the key component in hindering typical sexual functioning. In these individuals viagra (Sildenafil) can often be a useful treatment option.

Viagra is a PDE5 (phosphodiesterase type 5) inhibitor. The drug works by preventing the action of this particular chemical within the body. In laymans terms, the effect of inhibiting PDE5 stops another chemical messenger (Cyclic GMP) from being broken down. As Cyclic GMP is known to widen blood vessels within the penis, the use of viagra allows more blood to enter the penis, resulting in a powerful erection.

Aside from aiding sexual funtion, it is posible that regular erections may impede some of the processes that result in scar tissue formation (which is synonymous with peyronie's). A couple of top urologists combine Viagra with other treatments which should theoretically help treat peyronie's disease. One such regimen is known as the PAV Cocktail. It consists of Pentoxifylline, Arginine + Viagra and is perhaps the best first line treatment available for those new to peyronie's disease. It is occasionally used alongside traction therapy or VED use in order to attack the problem from several angles.

Also read: Viagra vs Levitra and Cialis

Contribute

I intend to add content to this site until it represents something of real value to the peyronie's disease community. This condition is one which is neglected to some extent by medical professions, and due to the embarrassment and distress of sufferers, advocacy groups are few and far between.

My intention here is to touch on various existing treatment options, and have a forward looking approach to potential developments and breakthroughs. What would also be useful is to have some actual sufferers feedback, in terms of what worked and what didn't work for you personally. This really would add to the relevance of the site and be of great help to other sufferers.

Information that would be of use would be your experiences being treated under a specific doctor, the treatment regime you undertook, how successful it was, useful contact numbers and advocacy efforts in the UK and abroad. Anything really. Your input is appreciated and any ideas are welcome.

Also, if you own a site relating to medical issues, and/or are writing an online article, it would be great if you give this site a mention, as I want to reach and make contact with as many peyronie's sufferers as possible. Feel free to post a comment below, or contact us.

Thursday, 6 August 2009

Vacuum Erection Device

For some men use of a vacuum erection device (VED) can be helpful in the treatment of peyronie's disease, though as with other treatment options it can take quite some time for results to show. The thinking behind this strategy is that use of a VED improves the blood flow to the penis, while also stretching out the scar tissue / penile plaque that is present. This is not only useful for those trying to avoid surgery (by lessening curvature somewhat) but also those hoping to reduce curvature to ensure that less length is lost if they do go for a surgical option at a later date. Aside from traction it is the only other mechanical treatment used to treat peyronie's disease.

VED use has not been extensively studied, but it is certainly a method of treatment that was helped some men regain lost length caused by peyronie's disease. Anything that stretches and exercises the penis is good for peyronie's sufferers, because it can help to increase and/or recover the elasticity of the penis cause by scar tissue. Many men with peyronie's struggle to maintain an erection, and as such this may contribution to the worsening of their condition. Regular penile exercise via erections through various means (oral, natural, devices) is a must in my opinion. It is actually thought that regular use of the VED may help some men avoid Erectile Dysfunction.

As with most methods it will not work for all, but some men swear by it. Once again it is a long haul treatment, so unless you are willing to stick with it every day for several months, VED therapy is probably not be the right treatment option for you. Treatment of peyronie's is a marathon and not a sprint. Improvements take time and VED therapy is no different to any other approach in that regard.

There are a number of quality vacuum erection devices for sale, so please do not go down the route of purchasing a cheap "penis pump". The VED required needs to be of a high quality, effectively medical grade. The Soma Correct is a good option, and Boston Pump also provide quality pumps and cylinders. A more detailed post relating to how to best use these devices is here --> Vacuum Therapy Protocol.

Traction devices are another option for reducing curvature and returning lost length. Click through for device info and news of successful traction device studies.

Friday, 31 July 2009

Peyronie's Disease FAQs

This section is designed to answer any questions you may have relating to peyronie's disease.

Q) my husband last february noticed that his penis had curved massively seemed like over night. THis has made our sex life gone. 1st question is there anything he can do to help with the curviture. 2nd. it is extremely painful anything he can do for that 3rd. we have tryed vitamin E for about 2 months and he quit taking it how long does it take to show any effects. 4th should we try to of sex or will this make it worse i am looking for some answers to help him?

A) Sorry to hear about your husbands condition. The entire site is full of options aimed at improving peyronie's disease symptoms. He should definitely try pentoxifylline for an extended period of time (6 months +) and CoQ10 as recent reports have indicated that it's useful for pain. Adding Cialis/Viagra into the mis might be a good idea if he has ED.

Some form of sexual interaction is fine, unless he finds that it increases the pain, in which case I should avoid activies that make pain worse and centre in on treatments in the short term.




Q) My penis has been curved for as long as I can remember. Do I have peyronie's disease?
A) If your penis has been curved for your whole life, you certainly do not have peyronie's disease. Your condition in that instance would be described as a congenital curve. If you are able to have intercourse, then it's not something you should worry about. If your congenital curve is substantial and hinders intercourse, you may want to consider trying a traction device. If that doesn't help, surgery could be the option for you. You'd likely undergo a plication procedure. Go to your GP for further advice.

Q) I've tried various treatments and still my condition hasn't improved. What shall I do now?
Unfortunately not all men will benefit from the current oral or mechanical treatments. It's important to try to bring about a multipronged approach, because this maximises your chances of a positive outcome (traction + oral treatments, vacuum erection device and oral treatments etc). If your condition has been stable for six months and your curvature is significant, you may want to consider surgery.

Q) My doctor recommended that I take a "wait and see" approach, and suggested no treatment. Is he right to do this?

A) Peyronie's Disease is something that is ill understood by a great many people, even some of those whose job it is to know about these issues. Waiting for your condition to improve on its own is in my view not a sensible course of action. While no currently available treatment can claim to be a "magic bullet", available treatments have certainly helped many men, and what is to be lost from attempting to treat the condition ASAP? Nothing.


Q) My doctor tells me that Vitamin E is the only useful treatment for peyronie's disease. Is he correct?

A) Vitamin E used to be habitually given to peyronie's patients, but in studies it has not been shown to be particularly effective. This does not mean that you shouldn't include it in an oral regime, as there is little to lose, but it shouldn't be your only treatment. Ask your doctor about Pentoxifylline.

Q) Is there a cure for peyronie's disease?

A) At this time there is no cure as such for peyronie's disease. All treatments are designed to combat the condition and hopefully improve the eventual outcome. Traction is known to be able to reduce curvature. Trental has been demonstrated to reduce the size of plaque in some men, and so on. The more angles you attack this condition from, the greater hope there is of a satisfactory outcome.

Q)I have experienced sudden curvature, but no pain, so surely I cannot have peyronie's disease?

Although it is common, not all sufferers of peyronie's disease experience pain. Any change in the shape of your penis is of a concern and should be followed up on immediately.

Q)Why did you remove the google ads from the site? Some of the products looked useful.

They're designed to look that way by the advertisers. Unfortunately tonnes of 'miracle pill' type advertisements appeared and it's just a massive ripoff. I wrote a post about them here. I'd like nothing more than to be able to directly offer effective oral treatments on the site, but as most of those are prescription drugs that isn't possible.

Again, if you can help out by expanding on existing answers, or have a question you'd like answering contact the site.

L-Arginine

Many of those with peyronie's disease suffer from ED (erectile dysfunction) as a result of their condition. It is of course healthy for all men to achieve erections on a regular basis, this is partly the reason why we have spontaneous erections, nocturnal erections and so on. L-Arginine is a precursor to NO (Nitric Oxide), which is required for erections to take place. Several studies have demonstrated an increase in the quality of erections from the use of L-Arginine.

L-Arginine is one of the cheapest supplements available and can be purchased from high street chains such as Holland & Barrett in the UK and numerous places abroad. For those looking for the best L-arginine supplement, San VasoFlow in a good option. It's popular in bodybuilding circles (provides a better "pump", more veined look etc) as well as fellow peyronie's patients where the benefit is increased bloodflow to the penis. Vasoflow is superior to many L-Arginine supplements due to its controlled release technology - so it stays in your system for longer. It is also coupled with L-Norvaline, which blocks the activity of arginase (promoting the conversion of arginine into nitric oxide). You could even combine Arginine with Pycnogenol , as studies have suggested powerful synergy between the two when it comes to treating ED.

This really is something that I would classify as a "must have", especially if you're in the active stage of the condition (as opposed to the chronic stage). L-Argine is sometimes used in combination with Pentoxifylline (Trental) and Viagra in what is known as the PAV cocktail. This treatment trio is recommended by some of the most respected peyronie's disease experts in the world (Dr Lue for instance).

Vitamin E

Vitamin E is a dilator of blood vessels and is known to prevent excessive scar tissue production when applied topically. I've personally had some success in using it to treat a scar caused by a burn to my skin, so I'm not a total vitamin E skeptic by any means. Years back it used to be the only treatment suggested for peyronie's disease sufferers, but this was mainly due to there being so few other available options, rather than a testament to the power of vitamin E.

Studies into Vitamin E have not particularly demonstrated it to be a powerful treatment for peyronie's disease. It is seen as a relatively safe though, and as such finds itself in the "does no harm, and may do some good" category. Some people swear by it, but in my view any improvement seen while taking vitamin E is more likely to be due to the natural course of peyronie's disease, or other treatments being taken alongside the vitamin. It perhaps is of some use when used as part of a multi-pronged strategy to combat the condition.

Should you wish to include vitamin E in a treatment program, I would advise you to purchase a full spectrum variety. Vitamin E consists of 8 fat soluble compounds. Many high street Vitamin E supplements only provide one of these, alpha-tocopherol, and so you may not be getting the maximum possible benefit. The full spec variety at least ensures that if this is a helpful treatment for you, you'll receive the maximum benefit from it.

Curcumin

Out of the many treatments suggested to peyronie's disease sufferers, curcumin is rarely mentioned. This is a shame as it has shown great promise in a number of conditions relating to imflammation and plaque. Of course there can be many key differences in plaque formation in various tissues around the body, but there are also similarities, so it's an option that should be given careful coinsideration.

There are various prescription TGF-beta inhibitors used to battle peyronie's (pentoxifylline, tamoxifen, etc) but curcumin is one of the only natural inhibitors of TGF-beta that I can think of. As peyronie's plaques contain a high level of TGF-Beta (which is a characteristic of a number of fibrotic diseases) there is good sense to combining a prescription route with a more natural and readily available course of treatment. In my view curcumin fits the bill.

The good news is that curcumin appears to be non toxic in high doses. The bad news however is that it has low bio-availability. As such there has been a trend towards finding ways to increase the effectiveness of curcumin. Many supplement companies mix it with bioperine (black pepper's active ingredient) as this makes the curcumin more readily available to the body. I would advise against taking any bioperine products if you're taking prescription medications though, as it is known to increase the bioavailability of certain substances while decreasing others. This makes it somewhat unpredictable.

Perhaps a safer way to consume curcumin and improve absorption is to dissolve it within warm oil. My personal oil of choice is extra virgin coconut oil. I heat the oil, then dissolve three or four curcumin capsules into it. Curcumin readily dissolves into oil and so this is the route I'd recommend for those wishing to try out this particular treatment to combat peyronie's disease. Other options include dissolving it into hot water (perhaps into tea) and taking supplements (Quercetin and Genistein) that inhibit the enzymes which can destroy curcumin.