My first post on this blog was written over eight years ago...

About this blog - July 4, 2007

I have Peyronie's Disease, also known as "penile induration" and sometimes informally called "bent nail syndrome". I've had it for about thirteen years, but an exacerbation a year ago took it from moderate to severe and effectively "disabling". 

This is not a common disease, but it's not as rare as you might think. It's not something men tend to talk about. I suspect the disease runs in my family since several male relatives have "Dupuytren's contracture", a related disorder -- but nobody talks about their broken organs. I think that's understandable. There's a reason this blog is published under a pseudonym. 

There's not much research into Peyronie's disease, and our knowledge of the disorder has progressed very little since the 1980s. There are no effective medical therapies, few clinical trials, no drug research, and the surgical treatments are nothing to brag about. There is lots of misinformation and a bit of exploitation....

...This blog is my personal perspective. I'm sympathetic to the desperation that drives people to "alternative therapies" (Vitamin E, alas, is now in that category), but I'm a science guy. So, no alternative therapies, none of the various scams, nada. No ads either.

I've had some measure of Peyronie's disease, for 21 years. I can't say I've moved on, more that life has carried me away. Between age and chance I have other health issues now, and of course there's the rest of life.  I don't have much more to say about Peyronie's disease, and I do have other things to work on.

So I don't think there will be much more on this blog. Looking back we haven't learned very much in the past few decades; in fact we haven't learned that much in over 240 years [1]. We know more about the mixed outcomes of surgical procedures. There are relatively new treatments with collagenases that may help with early disease. Traction devices, long considered a shady scam, may have a modest role.

We don't know the mechanism of disease. If I had to guess I'd say disorganized or dysfunctional healing following soft tissue injury, maybe withe a variable contribution of auto-immune disease. In this case the penis is the most vulnerable marker of a systemic disorder, and Dupuytren's contracture is another manifestation of disorganized healing. Maybe if we looked harder we'd find other examples. If the problem is really disorganized healing it will be extremely hard to prevent or cure the disorder.

We don't know how to prevent progression. If I could go back in time to my early injury I'd try early use of vaginal lubricants, some caution with sexual positions, and early use of erectogenic medications. I'm not aware of any research to support this however. I suspect if one is prone to Peyronie's the disease is going to progress but the rate of progression may vary. Some people do seem to stabilize or even improve.

I may be back here someday. I'll leave the blog open for now.

There's a lot to life. Carry on.

[1]"In 1743 Peyronie described a disorder characterized by induration of the corpora cavernosa of the penis. This condition is now referred to as Peyronie's disease." Wikipedia

Three years later: Thoughts on the state of Peyronie's Disease treatment and prevention

Three years or so since my last post, I'm still receiving email questions and comments on old posts.

Aside from being 3 years older, and, of course, having the penile fibrosis of "Peyronie's Disease", I'm fine. My hiatus wasn't due to any untoward event -- it's that my life is very full (overflows really) and I didn't have much new to say.

I still follow the research literature from a distance. There hasn't been much change. Among some articles of note:

• Surgical Management for Peyronie's Disease. [World J Mens Health. 2013]. If I were considering surgery, I'd want to hunt down a copy of this one.
• A retrospective comparative study of traction therapy ... [J Sex Med. 2012]: Is there any other time in the history of medicine that a sleazy scam has turned into something almost mainstream?
• The clinical and psychosocial impact of Peyr... [Am J Manag Care. 2013]: Yes, it's a big deal.
• Pathophysiology of Peyronie's disease: 2002, so not new, but it's an interesting review.

The story remains fairly grim for men with severe established Peyronie's Disease. The surgeries are not easy things, and the results are not amazing. This isn't too surprising -- the disease damages the tunica albuginea and associated plumbing; these are complex and delicate structures that we are far from being able to restore. I suspect we'll be able to regrow damaged heart muscle well before we can reverse this kind of damage.

Given that we don't yet have the technology to reverse this damage, the clinical efforts need to focus on prevention of severe disease. We need to catch the disorder early, and slow or prevent progression.

That's a bit tricky, since most people present late, there are probably multiple causes of penile fibrosis, and we haven't really shown we can prevent any of them. There's surprisingly little discussion of any of this, it's weird when one of the best references is in an LA Times sex advice column - penile fractures and Peyronie's disease.

Given our lack of knowledge I can't make recommendations. But, if I could go back in time to talk to my younger self, this is what I would have said:

• You need to minimize further damage.
• Avoid maneuvers that bend or stress the penis.
• Use lubricants.
• Use Viagra and the like to minimize risk of intercourse with a soft penis (likely to induce trauma or bending).
• If pain occurs avoid reinjury -- allow several weeks of healing.

I have no idea if any of this would work, but it's what I'd tell my younger self. Oh, and I'd tell him not to bother with the Vitamin E -- that was stupid.

It's easier to make recommendations about what urologists should do. They need to come up with a starting guideline on prevention of further injury, then do some case-control studies to see if it makes a difference. (Hard to study this, especially as funds are limited!).

Then urologists and primary care physicians need to educate men on how to respond to painful intercourse or penile injury, and start enrolling men in preventive programs before the disease progresses. It might not work, but it's worth a try.

If I see anything truly remarkable I'll add another post, but given the state of the art, and the fact that I'm past the prevention phase, I probably won't have too many more posts.

Maybe one every 3-4 years...

Xiaflex - one more step towards use with Peyronie's

Years away for use with penile fibrosis, but still worth following...

Triumph for Xiaflex, Drug to Straighten Clenched Fingers - NYTimes.com

... The Food and Drug Administration approved ... Xiaflex, last month as a nonsurgical treatment for Dupuytren’s contracture, a condition in which one or more fingers cannot be straightened.

Xiaflex, an injectable drug that goes on sale later this month, will not be cheap, at an estimated average cost per course of treatment of $5,400. But analysts expect sales to reach hundreds of millions of dollars a year.

And that total could go higher, if Xiaflex eventually wins approval for a related condition known as Peyronie’s disease, in which a bent penis makes intercourse painful or even impossible.

About one in 20 men is estimated to have Peyronie’s, but figures are not precise because people with the condition tend not to discuss it publicly...

... Some people treated with Xiaflex in clinical trials for the Dupuytren’s hand condition said it had made a big difference in their lives, and had allowed them to avoid painful surgery.

“When I looked down and saw my finger straightened out, I cried,” said Kenneth Nelson, 65, of Indianapolis. “It was to me just like a miracle.”

Xiaflex is an enzyme produced by a gangrene-causing bacterium, Clostridium histolyticum, which uses it to eat away the tissues of its victims. The enzyme, called collagenase, breaks down collagen, a major component of the body’s connective tissue that is found in skin, tendons, cartilage and other organs.

But collagenase by itself does not cause gangrene. And there are times doctors need to break down collagen, such as when an excess builds up in the hand or penis, causing Dupuytren’s and Peyronie’s. The ailments are named for French surgeons who described the conditions in the 18th and 19th centuries...

... Auxilium sought approval for treating Dupuytren’s first because it was easier to measure success in straightening fingers. But the company hopes to begin late-stage trials of Xiaflex for Peyronie’s disease later this year. In a midstage trial, injections of Xiaflex into the collagen plaque in the penis reduced the curvature. But the drug did not reduce pain or discomfort during intercourse by a statistically significant amount.

While collagenase itself is not patented, the companies do have patents on the use of the enzyme to treat Dupuytren’s and Peyronie’s. They are also shielded from competition for seven years under a federal law aimed at spurring development of drugs for rare, or “orphan,” diseases — even though newer estimates suggest these two diseases are not as rare as thought when the drugs were given orphan status...

This has been discussed for some time, so this is more of a milestone than major news. My suspicion is that if it does work at all, it will work best for persons early in the disease. Penile fibrosis appears to destroy tissues that will not regenerate, so even clearing the fibrosis does not mean restoring function.

Apologies for missing real comments

Most the comments I get on this blog are spam, typically for mail order viagra. I did miss several quite valid comments though, and I've just fished them out.

The blog obviously hasn't been very active. This is not because my fairly severe Peyronies has gotten any better. I don't think that's going to happen. It's mostly because my life is generally full of things that are either good or very demanding, and because there really isn't much new to say about this disorder.

I will try to catch up a bit more though.

Review of medical treament - nothing new

I've not added much to my blog posts because very little is happening with the understanding or management of Peyronie's Disease. I try to post when I find something novel.

This article doesn't have anything new, but it's a good summary of the urologist's current medical approach (emphasis mine and I've reformatted for readability):

Medical Management of Peyronie's Disease. [J Androl. 2008] - PubMed Result

Peyronie's disease (PD) is a wound healing disorder in which a fibrotic plaque forms in the tunica albuginea layer of the penis. It clinically presents as any combination of penile pain, angulation, and erectile dysfunction (ED).

Recent studies indicate that PD has prevalence of 3-9% in adult men.

While the exact etiology has not been established, PD likely results from a predisposing genetic susceptibility combined with an inciting event such as microtrauma during intercourse. During the initial acute phase (6-18 months), the condition may progress, stabilize, or regress.

For this reason authorities recommend a more conservative treatment approach with a trial of oral and/or intralesional pharmacotherapy before surgical reconstruction is considered.

Oral therapies most commonly employed include tocopherol (vitamin E), and para-aminobenzoate (Potaba), with colchicine, tamoxifen, propoleum and acetyl-L-carnitine being used less often. There are a limited number of long-term placebo- controlled studies with these oral agents and for the most part, studies have failed to show a consistent beneficial effect.

Intralesional injection therapy for PD is more commonly being used as a first line therapy. The current standard of care includes injection with interferon-alpha-2b, verapamil, or collagenase.

Interferon-alpha-2b, in particular, has been documented in a large, multicenter, placebo-controlled study to show significant benefit over placebo in decreasing penile curvature, plaque size, penile pain, and plaque density.

However, intralesional interferon is associated with post treatment flu-like symptoms unless premedicated with a non-steroid anti-inflammatory agent. Other available therapies that have not consistently shown efficacy in placebo-controlled studies include corticosteroids, orgotein, radiation, and extracorporeal shockwave therapy (ESWT).

Surgery is considered when PD men do not respond to conservative or medical therapy for approximately 1 year and cannot perform satisfactory sexual intercourse...

Translating from the jargon I'd summarize this as:

1. Most treatments have been shown not to work and should be abandoned.
2. Interferon-alpha-2b injection may be worth trying in the acute phase, but be ready for side-effects. I'd recommend asking for an explanation of exactly how much improvement was found, and whether the improvement was age group specific. Interferon injections have been proposed for many problems and they are usually found to be ineffective. This would be more persuasive if there were solid physiologic reasons to think it should work.
3. The "wound healing" explanation is not confirmed. I suspect the cause varies with age of onset, and that there may be a common predisposition both to injury and to dysfunctional healing.
   

The article does not address how well surgery works, it's a medical review. Long term surgical outcomes have been mixed at best.

The take away is to consider the interferon but cautiously. We haven't learned all that much about Peyronie's in the past 10 years, but at maybe we're using fewer ineffective treatments.

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.

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.