Hawk - good and fair review.
His book is a fair and accurate portrayal of the current state of the art in Peyronie's Disease management. It is already sort of out of date about the role(s) of testosterone deficiency in promoting
fibrosis of the tunica, and in discussions of the role of TGF inhibition and NO production in newer (and perhaps novel) ways of treating
fibrosis. It does not discuss in enough detail the autoimmune function that might play a role in Peyronie's Disease, but then, not that much is published or known about this part of the puzzle.
What saddens me is that so little really helps. The "known" remedies simply do not work, or barely work, better than
placebo. Many have been very poorly studied and not in a controlled fashion. The latest travesty masquerading as "research" is the publication that showed that only 18% of patients got better on
Verapamil, whereas 22% got worse, and the rest made no change. In total, 82% got no better or worse, and the title was something like "Intralesional
verapamil prevents the progression of Peyronie's disease.". Controlled? Nope. Just a series of patients treated in a clinic. Better yet, the senior author wrote in an article written months earlier that, for untreated patients: "All patients who reported penile pain had improvement and 89% reported complete resolution (of pain) at followup. Of men with curvature 12% had improved, 40% remained stable and 48% had worsened at followup."
So this shows that
12% of men without treatment are better at one year, and
18% with verapamil treatment are better at one year. And we are supposed to trust this crap?
That is what passes as science in this field. It is an embarrassment (or it ought to be), and yet, surgical repair is still held out as the single best solution. That leaves alone the matter of whether or not the patient has a stable process or one (like mine) that has been gradually progressive over time. If someone had taken a nip or tuck in my penis years ago, it would simply be leaning a different direction now. And yet, the urologic community has yet to devise an algorithm to help the practitioner (who most of us will meet in our daily lives) to decide who should get which treatment.
So the book is honest enough. It is unfortunate that it misses an opportunity to recognize the new reality of medicine - that patients will seek help through the internet for better or worse, and that this organic process of patients learning from each other is changing the face of all of medicine. Look at one orphan drug, perfinidone, used for treatment of pulmonary
fibrosis. Because the people benefiting from this drug (not yet "proven" in clinical trials) were able to network through the internet, a class action suit brought against Intermune (who make an alternative treatment for IPF, and who purchased the rights to perfinidone simply to suppress research on it) worked. Perfinidone is now back in Phase 3 studies, and helping those with the disease. This was completely because of the ability of those being treated with it to band together through the internet. We are going to see this more often - the understanding of patients forcing faster shifts in research by Pharma.
So I do regret the neglect of our very own site, and instead naming of a dead site that is quite inactive. It does a disservice to the community of men who read the book, and it devalues the information whenever those of us who know the territory recognize the erroneous nature of even one part of a book.
Tim
Author
Topic: Book Review - Understanding Peyronies Disease - Dr. Levine (Read 22191 times)