Wednesday, March 5, 2008

Dupuytren disorders site and Peyronie's disease (IPP)

A comment by Wolfgang on a prior post pointed to a web site on Dupuytren's disorder, which included this page - Diseases related to Dupuytren: Peyronie's disease (IPP). It's a great resource for persons with Peyronie's and I need to explore it further. On initial inspection it feels pretty evidence-based and very topical.

It's authored by a German scholar, written in English.
Dupuytren e.V.
Westerbuchberg 60b
83236 Übersee

Germany

Responsible for the content of this site:
Secretary/1. Vorsitzender: Dr. Wolfgang Wach

Dr. Wach is a Dupuytren patient, not a medical doctor.

Friday, February 29, 2008

Vitamin E: not harmless

Vitamin E is commonly prescribed for Peyronies Disease, even though it has been shown to have NO benefit and even though several studies have suggested that high dose Vitamin E is mildly toxic.

Today another study suggested Vitamin E may slghtly increase lung cancer diagnoses:
Vitamin E Supplements May Raise Lung Cancer Risk - washingtonpost.com...

Our study of supplemental multivitamins, vitamin C, vitamin E and folate did not show any evidence for a decreased risk of lung cancer,' study author Dr. Christopher G. Slatore, a fellow in the division of pulmonary and critical care medicine at the University of Washington, said in a statement...

... Every increase in vitamin E of 100 milligrams per day was associated with a 7 percent rise in lung cancer risk -- translating into a 28 percent increase in risk over 10 years for someone taking 400 milligrams of vitamin E daily....
A 28% increase in lung cancer risk still isn't in the range of second-hand smoke, but it's significant.

Vitamin E is worthless as a Peyronies treatment. It's probably not harmless in large doses.

Urologists should not prescribe it.

Tuesday, February 5, 2008

Device corporation launches "social networking" site for Peyronie's Disease -- and their "biodesign repair graft".

Cook Medical is a part of the Cook Group, an oddly diverse multinational (emphases mine):

Since 1963, Cook Group companies have been among the leaders in developing healthcare devices that have improved lives around the world. COOK remains at the forefront of medical research and worldwide sales of products for endovascular therapy, critical care medicine, general surgery, diagnostic and interventional procedures, bioengineered tissue replacement and regeneration, gastroenterology and endoscopy procedures, urology, and obstetrics and gynecology.

Our COOK corporate family also includes companies that manufacture specialized industrial parts and offer commercial services in the travel, real-estate development and management, and retail fields.

COOK is a global company with a global focus - and a global future.

Real estate services and endovascular devices? Now that's weird. I suspect they're privately held, which probably explains their idiosyncratic portfolio.

The medical device company, among other things, sells the Surgisis Biodesign Peyronie's Repair Graft

... The Surgisis Biodesign Peyronie's Repair Graft can help restore a patient's lifestyle and confidence. Surgisis Biodesign provides strength and flexibility for reinforcement and correction of penile curvature. The graft signals the body's surrounding cells to grow across the scaffold, remodeling into functional tissue. Surgisis Biodesign is easy to hydrate and suture, minimizes scar tissue formation, and is resistant to infection....

The Surgisis line appeared on "The History Channel" a few months ago, which leads to some cynical speculation on how that channel is funded. I couldn't find any medical articles referencing this product, a scholar.google.com search had one hit.

Which brings me to Peyronie's - Getting Information and Help. This is billed by Cook Medical as a "social networking site" (from an email I was sent):

... Cook Medical is launching MensHealthPD.com, and leveraging social networking capabilities to create a safe and interactive destination for physicians, patients and their partners to learn about symptoms and treatments, discuss and share thoughts and opinions and have access to the latest information around Peyronie’s disease.  Physicians can also engage in a secure, physicians-only Q&A forum to foster knowledge exchange...

Unsurprisingly their therapy reference includes this blurb:

... Plaque Incision or Excision and Grafting: This procedure removes tissue on the inside of the curve and replaces it with a graft to allow the penis to straighten. The graft can either be tissue from the patient or a biological "off-the-shelf" material such as Cook Medical's Surgisis® Biodesign™ Peyronie's Repair Graft or a cadaveric pericardial graft...

Well.

Ok, so it's a time honored practice in the pharma industry to create "patient friendly" web sites which, oddly enough, slip in some marketing on the side. Even so, this one feels a bit a bit edgy to me. There are NO references to any published research about their "Surgisis Biodesign" graft material, and it's obviously the entire reason the site exists.

If you do visit this site, please remember why it exists.

Monday, December 3, 2007

Urologists - how they treat Peyronies Disease

Urologists are no more evidence based in their practice than most physicians ...
Urologist Practice Patterns in the Management of P...[J Sex Med. 2007] - PubMed Result

Introduction. Peyronie's disease (PD) is a poorly understood clinical entity. Aim. We endeavored to determine how contemporary urologists in the United States manage PD.

Methods. A randomly generated mailing list of 996 practicing urologists was generated from the American Urologic Association member directory. A specifically designed survey was mailed with a cover letter and a postage-paid return envelope. ...

...Results. Responses were received from 236 (24%) practicing urologists. Vitamin E was the preferred initial management for 70% of respondents, with observation, Potaba (Glenwood, Englewood, New Jersey, USA), colchicine, verapamil injections, and verapamil gel favored by 32, 20, 12, 7, and 10% of respondents, respectively. Fifty-seven percent of respondents performed surgery for PD, with penile prostheses, Nesbit procedure, grafting, and plication used by 76, 66, 55, and 51% of respondents, respectively. Medical therapy and/or observation was the preferred management for all of the cases except case 3, for which penile prosthesis placement and referral were the favored options by 39 and 30% of urologists, respectively...
Vitamin E does nothing and may have some toxicity in high doses. So it's unfortunate that 70% of urologists still use it. On the other hand, I suspect that the number would have been 90% a few years ago, so this probably is progress.

There's a bit more evidence for some other interventions, but none that I'm aware of for Potaba and precious little for cochicine.

Sunday, October 28, 2007

Surgery isn't so hot either ...

I've just posted on another study showing Vitamin E is a waste of money. This article points out at least some surgical techniques aren't so great either. 

Long-term patient satisfaction after surgical corr...[Int Braz J Urol. 2007 Jul-Aug] - PubMed Result

...Long-term outcome after surgical correction for PD and CPC with the technique of tunical plication can be poor. Probably patient expectations are above the real performance of surgical techniques...

We simply don't have any effective treatments for established Peyronie's Disease and there are none on the horizon. There's probably more hope in:

  • early identification of at-risk persons (probably via genomic testing) and inventing and studying preventive measures
  • focus on interventions for early onset disease in young persons

Vitamin E really, really, really does not do anything

Yet another in a long line of similar results ...

Comparison of vitamin E and propionyl-L-carnitine,...[J Urol. 2007] - PubMed Result

...This study did not show significant improvement in pain, curvature or plaque size in patients with PD treated with vitamin E, propionyl-L-carnitine, or vitamin E plus propionyl-L-carnitine compared with those treated with placebo...

Vitamin E has some mild toxicity as well, though I can't recall the details at the moment.

Urologists, stop the Vitamin E. Please. It looks silly.

Sunday, September 30, 2007

Peyronie's emerges from the closet

Peyronie's isn't the kind of disorder most people are comfortable complaining about. Dole made impotency somewhat acceptable, but, no presidential type has done that for Peyronie's. Still, the boomers are getting Peyronie's, and the boomer's are good about dragging things out of the closet.

Peter Kurth is a gay man who's been HIV positive since 1981, so he knows something about the world of shameful secrets and dealing with life's indignities. Writing in Salon, he comes out about something more embarrassing than gender preference -- Peyronie's Disease. He also illustrates why it's kind of unfortunate that Peyronie's is "owned" by urologists ...
middle age, crooked penis | Salon Life

... Peyronie's disease, the doctor then told me gently, is also called "partial penile disassembly." It is a condition of "uncertain cause," characterized by plaque, or a hard lump, or scar tissue, that forms in the penis and causes an abnormal curvature when the member is erect. Cases range from mild to severe. Peyronie's isn't "rare," exactly, but it's not "common" either. And it may or may not have anything to do with HIV or the medications.

"It afflicts men mainly in middle age," the urologist shrugged. "The sexual problems that result can disrupt a couple's physical and emotional relationship and lead to lowered self-esteem."

While I was stuck on the phrase "middle age," he carried on: "It's just the roll of the dice for middle-aged men. My guess is your penis has suffered some kind of trauma."

"Oh, Doc, you don't know," I answered, thinking of my whole checkered sexual history. "But the 'trauma' would have to have occurred some time ago, because my penis hasn't suffered anything in about three years."

Apparently there are only a few treatments for it, and my doctor tells me that none of them will work effectively for me. The first line of defense is massive doses of vitamin E, which the doctor can't, in good conscience, give at the levels he would normally prescribe, as vitamin E would contribute to "hepatic toxicity" (liver problems), brought on by the other pills I'm on. The second option is injections of some kind -- needles to the dick -- "which hurt like hell," the urologist said, "and they don't work, either." The third is penile implants, "but who wants a lead weight between his legs?" (I refrained from comedy here -- I knew all too well what he meant.) And the fourth, and most drastic, is surgery. "But I warn you," said the doctor, "you'll lose two or three inches. No more Peyronie's, but no penis, either...
Partial penile disassembly?! That's the wackiest label I've heard. Vitamin E is also worthless advice, it appears to be not only useless but it may have harmful systemic effects in high doses. On the other hand, the rest of the advice is pretty accurate and nicely put.

The notable thing about this post, though, is not the description of Peyronie's. It's that the disease has been publicly "outed". Thanks Peter!