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I've been reading this forum and looking at others like it for a couple months now and thought I would share my own experience with accutane and the resultant hair loss.

I'm a 20 year old male who took 40mg daily from June 2007 to July 2007 and then 80mg from July 2007 until I quit in mid-September 2007. My scalp started to itch a lot about a week into the drug, but it wasn't until mid-July that I started noticing lots of hair loss. My derm told me it was common and that it was "just my body getting used to the medication." When I came to him a month later pointing out the bald spot developing on top he blamed it on MPB and put me on propecia. Eventually I did some research (wish I did it a lot earlier...) and saw all the stuff about permenant hair loss and how the shedding can be prolonged for months after the medication is over. My derm of course told me that the shedding will stop six weeks after I stop taking the drug, but obviously this was long after the point where I stopped believing him. I have no history of MPB in my family and the hair loss (while definately noticible on top) is definately diffuse- its coming out from all parts of my head.

I talked to another derm who told me it would grow back, though it may take a bit longer for the shedding to stop than 6 weeks- she's only had two patients (one male, one female) experience this side effect and both of them recovered their hair. I've also read a study published by a derm who documented sixteen patients experience hair loss out of about 400, and all of them recovered their hair except for one who experienced "persistant hair loss." Moreover I've contacted a hair loss specialist who is going to take a look at me next week and agreed that accutane is probably the culprit (gee thanks for enlightening me...). I've been off the drug for about seven weeks now and continue to experience hair shedding, though it seems to be in the range of about 100 hairs per day- 20 or so on the pillow, another 30 to 40 lost during the day and maybe 50 in the shower. Its difficult to tell because my hair is short but I can definately see my scalp through my hair now and the balding spot on top is quite difficult to conceal.

I currently use nioxin system 2, propecia, biotin (5mg) and take vitamin c pills. I have been using this regimin for about 2 months now and my individual hairs seem to be a bit thicker than they were while I was taking the drug. I noticed this change when I got my hair cut short- however overall this thickening effect is not enough to overcome the hair loss cosmetically. My hair line doesn't seem to have receded much (thank god) but all around my hair is pretty thin. Moreover, after I got it cut short I noticed that it was much easier to pull it out. Whats been happening lately is that I'll have these itches on my scalp in very specific places- I have to scratch because it drives me crazy otherwise- and when I scratch the itch, a hair or two will usually come out with it. A simple light tug test on certain parts of my scalp (especially the back) will yield anywhere from 1 to 5 hairs.

I've attempted to contact some of the people who have posted on forums about their hair loss from years back and one fellow did reply, telling me that he simply ignored it after a while and about a year later he realized his hair was no longer falling out and was about 90% better overall so clearly it takes some time both for the shedding to stop and the hair to regrow. He also told me that his acne came back, which follows Andy's original post with his derm's answers saying that the return of acne is a sign that the hair will probably recover. My acne has started to come back a bit, so I'm hopeful the shedding will start to taper off soon.

I'm very interested in trying to put together some kind of study which actually gives folks like us some insight into this problem based on others experiences. I've had 2 derms and a pharmacist tell me that my hair will stop shedding and grow back eventually, but the stuff people have posted on the web is pretty frightening. Moreover a lot of them stop posting after a while, indicating they either recovered or stopped caring. I'd be very interested if it were possible to track a bunch of these folks down via email or some other way and put together a survey asking about their experiences, what the used to combat the hair loss, how long its lasted, etc so we have more than just people's frantic sob stories from five years ago and the (seemingly clueless) opinions of our dermatologists. I'll continue posting and checking things out here and perhaps upload some pics too. I've been taking monthly pictures of the top of my head to try and determine how much worse its been getting.

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