Jayman,
Why do you think I posted my experience online? Well, it was both to get advice (not sarcasm and criticism) and to let others know that when they experience a reaction to a medication they should file an adverse event report as I have done with Merck.
The reason there is little data on side effects from Propecia that weren't noted in the original studies is that people are lax about reporting the adverse results to their physicians and physicians and pharmacists tend to be lazy about reporting the events back to the manufacturers. Significant side effects often go unnoticed/unreported for years as a result. Tetracycline can cause permanent staining of childrens' teeth yet that wasn't recognized/described until after the drug had been on the market for 25 years! I can name numerous other examples of untoward side effects that weren't picked up in the original studies (phen-phen being one of them).
There is nothing in the Propecia package insert about "sheds" nor is there a description of them in the original studies. Does that mean the phenomenon doesn't exist. No, it simply means that the numerous people that have experienced sheds haven't bothered to report it as a side effect.
On sites like this it is a commonly described phenomenon and it's treated as a rite of passage that one has to go through before new hair growth starts. It seems to make intuitive sense, but is there really any data on that? My dermatologist, a prestigious UCLA dermatologist didn't think that Propecia caused sheds....is he correct? I didn't think so either.
Most of those people who shed probably did go on to experience hair growth above and beyond their baseline.... but some probably did not. Is the data on side effects published by the manufacturer even relevant to the shedding scenario?
If one were to believe the data presented in the Propecia package insert, no patients on Propecia had lower hair counts at 6 months than before starting the drug....yet the numerous testimonials on this and other websites seem to contradict that. Is that scientific. No. Does it have to be to be significant. No. I've seen numerous testimonials from intelligent, educated, seemingly reliable individuals who are as puzzled as I was when my hair suddenly began falling out after starting a medication to slow hair loss. I'd never looked at one of these forums in my life until I had been on Propecia for two weeks and noticed my hair falling out at a striking rate. I turned to the experiences of others for answers as the manufacturer (and physicians) had no answers.
If no one ever reports any side effects then the manufacturer can happily and glibly report the extremely low incidence of side effects- only 1.4% of individuals discontinued the drug for side effects that were "possibly, probably, or definitely" related to the medication. Does that percentage really seem reasonable to you? It was less than the discontinuation rate for the placebo. By the way, sheds weren't described in the original minoxidil packaging but after numerous post marketing reports from patients they eventually were.
The problem I experienced was more than "possibly" related to the medication and I did my duty and reported it. Others should do the same, and that was the thrust of my original post.
I'm sure you'll want to have the last word on this and I don't care.
I'm tired of this banter with you, I've heard your opinion and I'm no longer interested in it: you can have the last word if you like.
I'm just going to continue to report on my response after discontinuing the drug- I think it's a service to others who are contemplating taking the medication to be fully informed.
Again, for the record I'm sure that Propecia benefits far more people than it hurts- but it clearly seems to be detrimental to some. One would have to truly be naive to believe the published adverse reaction rates.
I'm happy to say that I've been off Propecia since September 18, and the scalp itch is finally dying down. My skin is less oily, I no longer have dandruff, and I definitely have shed less the last two days... only about 20-30 hairs when I comb my hair...as opposed to the 150-200 I was losing on September 10. I'm still waiting for my testosterone and dht results...they were obtained the day I discontinued the Propecia. I'll post them when I get them.