Saturday, 13 October 2012

Propecia

For many years there have been anecdotal reports on online peyronie's disease forums from men who put their condition down to the hair loss drug Propecia. On occasion these concerns were listened to, while at other times they were given short thrift. The fact of the matter is that peyronie's disease is and always has been most common in men of the age range most likely to take drugs like propecia. Where no obvious injury proceeds the development of peyronie's disease a desire or desperation to find a reason for the condition is understandably very common.

It does appear though, that the idea that there may be a link between the drug and peyronie's disease is gaining traction. Propecia has been tied to various health concerns (including sexual side effects such as erectile dysfunction and impotence), as a result of which there are growing number of Propecia related lawsuits in the United States. In April drug's maker Merck & Co were ordered to increase the severity of warnings on their labeling. The regulatory body stated that there is "“a broader range of adverse effects than previously reported in patients taking these drugs.” Peyronie's disease is not one of the Propecia sexual side effects currently listed on the drug’s label.

The FDA has launched in effort into gathering information on men who have suffered peyronie's disease and other side sexual effects. Some men left with health issues they put down to Propecia are angry that concerns raised at the time of the drugs approval were not taken more seriously. Again, this could be the case of men attributing reasonably common condition within their age range to a drug typically taken by them. That being said, from a personal point of view I'd rather lose my hair than take a drug which is being linked to a growing number of side effects.

Sunday, 16 September 2012

3D Imaging for Peyronie's Disease

As reported in Urotoday, for the first time ever 3D imaging has been used to document improvement in patients with penile deformity. As such imaging techniques become more widespread, it should provide us with a more detailed look at how the condition can alter over time and what changes take place as a result of the treatment regimen the patient is taking.

Some peyronie's disease studies have revealed that, from a visual perspective, patients sometimes underestimate and are therefore dissatisfied with improvements that have taken place. With 3D images at hand, it will offer a precise and objective view of the situation rather than a more subjective one. Where the condition no longer impedes sexual functioning, this may lead men to concentrate at what improvement has taken place, rather than what hasn't.

3D imaging should also be useful in obtaining more precise results in future peyronie's disease studies, since measuring improvement and changes by hand or by 2D imaging may not always reveal the full picture.

Sunday, 9 September 2012

Tim Whittlestone

In 2010 I posted about Bristol Urology and how they appear to be one of the better choices of urologist clinic to visit. There are so many stories of men with peyronie's disease being knocked for six by urologists low on peyronie's facts, dishing out "wait and see" responses instead of proven treatments. Positive experiences are worth their weight in gold, so I'm pleased to be able present such an experience to you:

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I just wanted to drop you a quick line with a follow up on my progress, having seen Tim Whittlestone privately at Bristol Urology, which was one of the names you suggested and I thought he was excellent. He examined me thoroughly while asking pertinent questions in a polite but professional manner that felt proactive and put me at ease. We have organised a follow up appointment.

I have been prescribed a combination of Pentox and Cialis. In the short term he says Cialis will make erections more painful as it stretches the plaques but he thinks this is a safe combination that is delivering good results, though the time scale of improvement will vary from case to case.

Thank you very much for suggesting Tim Whittlestone as a choice. Parking was easy and it was a straight trip down the motorway so I would say Bristol Urology is a good choice even if you have to go privately. They got me in there with a short wait compared to 6 weeks with the NHS.

Thanks

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If you have any positive stories of urologist visits please do make contact and share your experiences.

Wednesday, 22 August 2012

Vacuum Pump Question

Hi,

I have read that the soma blue is a specific pump for men with pd? Can you tell me where or which UK site a can purchase products from.

Thanks,

N

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Hi N,

I've attempted to locate a Soma Blue in the UK, but aren't having much luck right now. I had previously heard of the Soma Correct being used to treat peyronie's disease. In the successful VED study (http://www.ncbi.nlm.nih.gov/pubmed/20438558) the Osbon ErecAid was used. Also, bostonpump.com have a fair few suitable options. Hopefully one of these will be suitable and readily available. If you're able to foot the customs charges, ordering from abroad isn't always a bad option.

I tried to reply via email but it bounced, so hopefully you'll see this of the Peyronie's Disease UK site.

Thanks,

Peyronies-Disease.co.uk

More on VED therapy here.

Monday, 13 August 2012

Urologist Videos

I've located a few clips of well known UK and US urologists, some of which are located within documentaries and videos available freely on youtube. Not all of these video clips are peyronie's disease specific, but that's not really of relevance as they do offer footage of urologists dealing with matters relating to the penis. When going to see a urologist I don't ever think you can be armed with too much information, and knowing how your urologist describes their professional life or interacts with others can be reassuring to some.

Each clip is timestamped to begin at the relevant section:

My Penis and I [2005] - Brief Consultation featuring David Ralph relating to penis size issue and possible treatment options.

My Penis And Everyone Else's [2007] - An interview featuring urologist an andrologist Mr Suks Minhas on how some men resort to desperate measures to increase penis size.

In this video for Rush University Medical Center , Laurence Levine (Chicago, Illinois, US) touches on areas of his work and why he enjoys his job.

Dr. Tom Lue (California, San Francisco, US) discusses peyronie's disease in this 6 minute interview.

Click for peyronie's disease videos relating to surgery and the consultation process.

If you know of footage of other peyronie's specialists talking about sexual health issues feel free to email me at peyuk@hotmail.co.uk

Friday, 6 July 2012

Peyronie's Disease Web Episode

A while back I posted a video of a peyronie's disease consultation featured on Channel 4's Embarrassing Bodies show. There has now been a web based followed up discussion, which is worth checking out:



I  enjoy the matter of fact manner in which Dr Christian discusses the condition with his colleagues and commend channel 4 for coming back to this topic once again. All too often peyronie's disease is either ignored by mainstream media, or treated as if it's a laughing matter, as is apparent in this segment from The View.

Saturday, 9 June 2012

Verapamil Injections

A peyronie's disease treatment option I've neglected to cover so far on the site is verapamil injections (VI).

Verapamil is a calcium channel blocker thought to be able to impede and reverse the scar formation process. Verapamil is injected directly into the plaque over a course of time - often every two weeks for several months - in an attempt to break up scar tissue formation. The penis is numbed and injections are made in 20-30 locations using a very small needle.

Some men have reservations about verapamil, feeling that it has not helped them, while others see noticeable benefit. One reason I put off writing a post about verapamil for so long is that reports on online peyronie's disease communities from men receiving verapamil injections are very mixed. Then again, it could be said that those who respond positively to treatment are less likely to be vocal about their experiences. Several reputable urologists do offer treatment strategies of which verapamil injections are a component, so that's something to factor in.

Of the verapamil studies out there some suggest an improvement in up to 60% of peyronie's patients (reduced pain and curvature), others no improvement. Side effects include bruising and soreness. The treatment itself can be painful for some men. It is thought that the skill of the doctor injecting may have significant bearing on the success of the treatment. A topical version of verapamil also exists, but the general consensus appears to be that it isn't at all effective. Verapamil injections are sometimes used with other effective treatments (oral options and traction) in a combined approach.

The new kid on the block in terms of injectable treatments is Xiaflex, which is due to hit the market in late 2013. It may be that this completely replaces verapamil as the injectable treatment of choice. Time will tell.

Monday, 4 June 2012

Xiaflex moves a step closer

Shares in Auxilium Pharmaceuticals rose today after the company confirmed that it intends to file for marketing approval of Xiaflex by the end of the year. This announcement comes after the treatment met the study goals in two Phase III studies and as such is now viewed to be a viable treatment for peyronie's disease. This is certainly a promising development for peyronie's disease sufferers worldwide. Note that this is not a 'cure', but has been demonstrated in studies to reduce curvature. Dr. Culley Carson, a professor of urology at the University of North Carolina stated that the results “are not overwhelming and dramatic”. Let's not forget though that in men cases men do not need overwhelming results, they need results that allow for normal sexual functioning.

It's worth noting that traction is used in the Xiaflex study to remodel the penis post injections. It is already known that traction can reduce penile curvature and as such, it would likely to useful to compare 'traction vs xiaflex + traction' studies at some point.

I'm told that Xiaflex injections will likely be available towards the end of 2013. This treatment has been covered on the Peyronie's Disease UK site previously, but for the sake of completeness I'll endeavour to put together a new post over the next few days covering injectable treatments such as Xiaflex and Verapamil injections.

Saturday, 19 May 2012

Visitor Email

Dear Peyronies-Disease.co.uk,

I'm 62, have no pain, can become erect but with a 45 degree bend to the left as I look down. I'm 12 months into the bout of peyronies disease. There is the usual hard lump located at the base of the penis which when erect seems to stretch. I don't have intercourse any more because I am too embarrassed to try. I do not want surgery and would welcome your thoughts on Potaba and where do I get it, thanks,

Jack

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Hi Jack,

There are mechanical methods designed to reduce curvature:

Traction: http://www.peyroniesdisease.org.uk/p/traction-penis-extenders.html

VED: http://www.peyronies-disease.co.uk/2009/08/vacuum-erection-device.html 

These types of treatments are designed to stretch the scar tissue and reduce curvature. There are various studies confirming this. They are sometimes used alongside pentoxifylline (which is now typically seen as the drug of choice, over potaba - though I appreciate that can be effective for some men). It's debatable how effective oral treatments are once the condition is stable, compared to when it's active but it can't hurt to try to hit this problem from multiple angles. Where you are seeking advice from a medical professional, it definitely makes sense to find someone with a good knowledge of this specific condition. Not every urologist is a peyronie's disease expert.

Thanks,

Peyronies-Disease.co.uk

Wednesday, 2 May 2012

Treatment Question

Dear Peyronies-Disease.co.uk,

I hope i am not going to bore you with my story I will try to keep it as concise as possible. About two years ago when I noticed a lot of pain when getting erections I went to my GP who referred me to a urologist who examined me and then referred me to a dermatologist [as i had this white discolouration on the glands of the penis] this turned out to be lichen sclerosis. when I went back to the same GP for the sebacyn cyst on the base of my penis he gave me no treatment as he said it would clear itself. After treatment for the lichen I suddenly noticed the lumps in my penis shaft. Another trip to the GP was met with the remark that “you have a nasty disease and nothing can be done” so I contacted my dermatologist to get a referral back to the urologist. There appear to be two plaques, the larger on the right side and a smaller one on the left side both being just below the glans. This has had the effect of looking like someone has taken a bite out of the right side and is causing the glans to bend over to the right hand side. I have been taking vitamin e,c and d for six months but would like to know if ved and traction would also be advisable? With traction devices is it safe to use given the location just under the glans? Would really appreciate your help and advice as I am very reluctant to have surgery if it can be avoided. I am UK based in the midlands.

Thanks,

Michael
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Dear Michael,

Many/most men with peyronie's disease do feel pain for weeks or months leading up to plaque development, and it may have been that the lichen sclerosis diverted you all away from what is likely a more pressing problem. "There's nothing that can be done" isn't great advice to receive from a medical professional, in actual facy it isn't actually advice at all. The "taken a bite out of" aspect is sometimes known as narrowing, and the bend, curvature. While traction is certainly suitable for most men, the positioning of the plaque (just below the glans) does make me think that it might be difficult to achieve anything approaching a stretch, due to the position that traction devices grip the penis. It may therefore be that a VED would be of more use here. There is a positive study relating to usage of vacuum therapy, and in additional to this, plenty of first hand experiences online.

For someone who has been told that nothing can be done you have at least been very proactive. If I had to recommend an oral treatment regimen to go along with the mechanical therapy I would go for pentoxifylline and COQ10 as there are positive peyronie's disease studies for both of them. The former of the two is a prescription drug. It's hard to know what improvement to expect, but it's certainly not uncommon or unwise to try to more conservative approach before considering options like surgery. Also, just to point out, surgery is usually only considered where the condition has been stable for a year or so.

Best,

Peyronies-Disease.co.uk

Friday, 27 April 2012

When life gives you lemons..

In the peyronie's disease community, penile implants are seen by some as the 'worst case scenario'. Implants becomes a viable option where it becomes impossible to maintain an erection via natural means or with the help of usually effective PDE-5 inhibitors like Viagra and Cialis. Erectile dysfunction is by no means a problem exclusive to men with peyronie's disease, but is to varying extents something that can be present in sufferers of the condition. I talk a little about penile implants here.

What prompted me to bring this subject up again was this post which I saw on the reddit website. The man posting had suffered a severe trauma (penile fracture) to his penis at a young age as a result of his first sexual experience. While he did seek emergency medical treatment after receiving this injury, unfortunately it resulted in him completely losing the ability to achieve an erection.

Although the poster did state that this particular post was his "most embarrassing", what struck me was his matter of fact attitude towards the implant. He has a girlfriend, and seems rather upbeat about life. What some would view as a significant issue to have to explain to potential partners at such a young age (having to press a button to gain an erection), he seems to take in his stride. His contributions in the comments section below his post even suggest that this isn't something he has kept secret from people, in fact even his work mates know.

We can of course get into positions of over-disclosing health issues to those around us, but I think this guy can teach us all something about how to take a negative situation and be as positive and honest about it as humanly possible. Of course where a condition is 'active' (as is often the case with early stage peyronie's disease) this can be a more complex situation. Where the condition is stable though, and there are treatment options available, a positive approach to one's future is a valuable asset ot possess.

Saturday, 31 March 2012

Tadalafil and Shock Wave Therapy Study

Over the years there have been a few extracorporeal shock wave therapy studies. I would say that a picture has emerged of a treatment that may help with pain, but is limited in other areas such as curvature reduction. This study bears that out in my view. Tadalafil is a powerful drug in the treatment of erectile dysfunction and it may well be largely responsible for the erectile function score improvements seen in this study.

Of course if shock wave therapy is responsible for pain reduction - rather than the passage of time - the timing of the treatment could be very important. If those men with the first signs of peyronie's disease pain but no plaque or curvature undertake a course of this treatment what would the results be? It's notoriously difficult to measure the effectiveness of treatments while the condition is still active, because the way in which peyronie's develops differs from person to person. The main conservative treatment exception to that, I'd say, is pentoxifylline - and possibly CoQ10 though more studies are needed. Once the active stage is over there are treatments such as VED, traction therapy and surgery which demonstrate results that are more easily quantifiable.

I'll cover injection treatments in the next post as this is one area that hasn't been heavily covered on the site so far.

Wednesday, 8 February 2012

Stem Cell Therapy


A new study reports that "Damage to parts of the penis vital for proper erections has been repaired for the first time with the help of stem cells. In rats, the treatment restored full erections, improved blood flow and accelerated healing." There is hope that eventually stem cell techniques will be able to help men suffering from peyronie's disease.

 In the study one groups of rats received a tissue only graft while another received grafts mixed in with stem cells. The stem cell group experienced better healing (less scarring) and better sexual function than the other group.

 Don't get too excited though as a number of current peyronie's disease treatments are very successful in rats in comparison to people. The next step is to test it on primates, and then eventually men. Stem cells are already being put to amazing uses and so this is definitely as area which potentially holds promise for the future. With scarring causing curvature and indentations in peyronie's disease sufferers, the more methods we have for altering/changing/stretching/disolving scar tissue the better. In theory stem cell therapy could eventually be the holy grail for us. That day may be some time off yet though.

Wednesday, 1 February 2012

Peyronie's Disease Question Via Email

I have just been looking through your website and was interested to note that mechanical devices are now beginning to get some support from urologists in the treatment of Peyronie's Disease. I last saw a specialist in Nov 10 and was told there was no treatment apart from surgical intervention. I had lost any hope of achieving any improvement but would be keen to try a vacuum pump. Could you recommend a suitable device?

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I have a vacuum pump that I ordered off the bostonpump.com website. It took a while to arrive but all in all I'm pretty happy with it.

It's a shame that your specialist didn't ackowledge conservative treatments. Some top specialists in the states advise a combined approach of pentoxifylline and traction device for example, the logic being that some men will improve enough to not require surgery, and others will gain some length back, which, even if they do eventually have surgery is positive. 

Regards,

Peyronie's Disease UK


Friday, 13 January 2012

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