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csmike, Thanks for replying and I'm glad your acne is gone now. But could you clarify just a couple of things: What point are you at right now - is your hair back to normal or are you still in the regrowth phase, etc.? How long have you been off of Accutane? How long was it from the time you finished the medication until the white bulb part started, and once that started, how long did it take until the shedding part ended and you started to see noticeable regrowth? Was the regrowth normal, meaning were the hairs normal diameter and not unnaturally curly or frizzy? I also have heard negative things about Rogaine and Propecia - I don't blame you at all for avoiding them; I don't need breasts or impotence. Thanks again.
Yeah, I know, but I'm just trying to get an idea of what to expect from the symptoms I've experienced so far. Just trying to have some sense of hope that it'll improve. It's very frustrating while waiting and not knowing, completely at the mercy of this Accutane-induced bullshit, while everyone (doctors, too) seems to be completely clueless and unable to tell you anything definite.
We can build supercomputers, split atoms, we've got GPS, high-speed internet, we can sequence the human genome, but whoa, whoa, you wanna know about Accutane hair loss? Sorry, that's way beyond the limits of human understanding right now. Bullshit.
Sorry, but you can tell I'm frustrated by this. I appreciate your input.
Hi Folks
Good to hear a lot of recovery stories, gives others hope that some day their personal nightmare will be over.
My head is pretty bad these days, I have about 20% of my normal hair left on the top of my head. I never thought it would get this bad, but I'm pretty close to going bald. My temples are brutal, almost no hair left.
My shedding continues 11 months later... 
Since I am certain what I have is not TE, but Diffused Alopecia Areata, my doctor has prescribed a topical steroid, Fluocinolone acetonid solution, which I am now applying every night, along with Xandrox 5% (Minoxidil) twice a day.
I am really hopeful that within 3 months or so, the steroid will induce growth in my dormant follicles as well as prevent the T-Cells from killing off my anagen hair cells.
I've pretty much exhausted all options, my hair has gone from bad to worse and its not only embarrassing its depressing. Thank goodness for hats.
Anyways, hopefully I'll have some kind of positive results within a few months.
The strange thing is that I have no itching, burning, etc.. just a mild redness where my hair loss is occurring. However I am very hopeful that the topical steroid will have some effect.
If in 6 months I don't see results, I'll go off of everything, and try to forgot about the idea of having enough hair to cover my head again...
Matt
Man, I really am sorry to hear that. I hope you're able to recover your hair. I guess you're an example of a case where there was no inflammation/itching/tingling present and there was still bad hair loss, so now I know that even if the absence of these symptoms is usually an indication that things will get better, it's not a definite indication that they'll improve. Good luck with your hair.
All I can tell you is, if you experience no signs of scalp inflammation like scalp itching, burning and tingling then you are most likely going to recover with time.
Does that always mean that you will lose your hair? I'm experiencing scalp itching (rarely burning, but sometimes if i actually give in and scratch), but I'm experiencing dry/itchy skin pretty much all over. It's definitely the worst on my scalp though.
I'm going into only my 3rd week on Accutane. I don't want to continue beyond this if it means hair loss is coming. I see my doc soon, but you know how they love to say "Accutane hair loss is temporary" over and over like a broke record if you ever try to ask them about it.
Intuition tells me that my hair is over-processed (highlighted) and DRY right now, in addition to Accutane making it dry... plus, I just changed conditioners. UGH I'm scared!
Let me just toss this out there.
In addition to my hair being thinner, I've noticed that my hairs are thinner; in other words, each individual hair is smaller in diameter. Some of them are really, really miniscule, I mean tiny. I've read about other people having this symptom, but can't tell what the consensus is on this. I've read that in some cases this can be one of the first stages of the onset of male pattern baldness, but I think, and hope, that this isn't what I've got.
I suspect that like most Accutane-hair symptoms, it varies from person to person, and nobody can say for sure what's going on with this, but maybe someone would care to contribute their experience/knowledge with this particular symptom.
Thulsa
You certainly will see thinner hairs and deformed hairs growing (weird thin curly hairs) these are vellus hairs that are not attached to the sebaceous gland.
This is the affect that Accutane has on follicles. The medication (or more appropriately poison), works on your sebaceous glands and causes them to miniaturize. With the follicle miniaturized the hair grows in thinner or deformed as a vellus hair.
With some luck over time the affects will wear off and the follicle will once again grow a normal terminal hair.
I see a lot of these vellus hairs growing now, but pre-accutane I had very few of them.
The reason why I would not conclude they are miniaturized hairs from MPB is because the process of MPB takes time, the hair shafts don't go from a normal size right to producing vellus hairs, over years and years the shafts get smaller and smaller.
I would conclude that the thinner hairs are a result of the affects of Accutane, and once the affects wear off (however many years that could be) then the affected hairs shafts will produce larger terminal hairs.
However if you do have MPB, once your hair follicle is able to produce a good thick terminal hair, the hair shaft may have already decreased in diameter and will not produce a thick terminal hair but a thinner terminal hair.
I don't have a family history of MPB, in fact I don't have any relatives for generations upon generations that have MPB, but currently I have lost about 70% of the hair on top of my head, but this is the result of hair shedding profously for almost a full year now, and it has not let up. My hair is growing back less and less, but this is because I have a case of Diffuse Alopecia Areata caused by Accutane mutating my hair follicles. I've started on a topical steroid, and hopefully within a few months it will have some affect to allow my follicles to grow hair again. However this is only a treatment, its not a cure. For people with these auto-immune conditions its just a matter of waiting for the body to correct itself.
I think the best way to deal with things is to realize its just hair and it could be worse.
Hope your situation improves quickly! Just take it easy and let the time pass, keep busy, it works for me! 
BTW, there are many theories as to what Accutane does to hair, but to be honest nobody actually knows. You just have to wait and give your body time.
Cheers
Matt
All I can tell you is, if you experience no signs of scalp inflammation like scalp itching, burning and tingling then you are most likely going to recover with time.
Also, look for redness of the scalp. THis is a clear indicator of an underlying auto-immune disorder. You may not have itchiness or burning and tingling, and still have inflammation of the scalp caused by the auto-immune disorder.
Thanks for your replies; they were informative. I'm really sorry to hear about your hair, and I wish you the best of luck with improving it. I haven't lost anywhere near as much hair as you, and unlike you, my hair isn't getting any worse, but I don't notice any improvement either. Anyway, I'm pretty sure that I don't have MPB, which is good at least. I'm just waiting for things to improve right now.
I agree that Accutane is indeed poison, and if anyone's reading this considering Accutane, hopefully it will cause them to seriously reconsider.
I pretty much came to the same conclusion as you did: that nobody really totally understands everything that's going on with Accutane-hair effects. But could you provide a source for your information on vellus hairs, etc. (or is that just common knowledge since Accutane shrinks sebaceous glands?)? And maybe you could elaborate on how this relates to telogen effluvium, as you understand it at least? Again thanks for the info & encouragement. Man I fucking hate Accutane.
Let me just toss this out there.In addition to my hair being thinner, I've noticed that my hairs are thinner; in other words, each individual hair is smaller in diameter. Some of them are really, really miniscule, I mean tiny. I've read about other people having this symptom, but can't tell what the consensus is on this. I've read that in some cases this can be one of the first stages of the onset of male pattern baldness, but I think, and hope, that this isn't what I've got.
I suspect that like most Accutane-hair symptoms, it varies from person to person, and nobody can say for sure what's going on with this, but maybe someone would care to contribute their experience/knowledge with this particular symptom.
I have the same as this. It seems like most of my hairs that are falling out are much thinner than before, and some of them are unnaturally curly that look like pubic hairs .___.
But honestly I don't see how MPB can come about in months like this, that is not natural either so I agree with electroshock. My temples seem to be looking worse lately, but when I look at the sides of my head and the back it seems pretty much the same shedding (knock on wood).
I think the uniform shedding is a better sign that it is TE, and temples are weaker, thinner areas to begin with not to mention it is what you see in the mirror every day; so I really am praying a lot of this will slowly reverse, stop and go back to normal once I am off accutane.
What do you guys think?
Yeah, sounds identical to what I've got. The temples were noticeably the worst when it first started, but actually they've improved and aren't as thin now. But there's still thinning all over - sides, back, top, everything. But the hairs on top do look the most frizzy and thin. I no longer have normal bangs, just frizzy thin shit that I push to one side now. It's been eight months for me and still no appreciable improvement. So I'm still waiting. But at least it hasn't gotten worse, so hopefully that's a good sign.
The miniturization is caused by the inflammation initiated by the Diffuse Alopecia Areata. The likely caused of accutane induced Diffuse AA is a loss of immune privilege within the hair follicle. Essentially the body can no longer identify what objects are foreign and which are part of our own body.
99% of accutane side effects can be explained in the same way. Anti inflammatorys help (especially in preventing miniturization), immuno supressants would stop the hairloss but there are no safe ones to use long term and supressing the immune system isn't a good thing systemically. Immunomodulators are also likely to help, but you would need to find the right one. I use mepacrin an anti milarial for a number of my accutane induced side effects, but it does nothing for the hairloss.
I recommend a combination of topical steroids, minoxidil, laser therapy and essential oils. I don't use all of these at the moment but they all help my situation.
Minoxidil is proven to change levels of cytokines locally (cytokines are immune cells) so it can act as an immunomodulator in alopecia areata. In some people minoxidil may prove effective, others maybe not so much....
Laser therapy helps in a similar way but also increases stem cell proliforation (every hair follicle has a collection of stem cells at the bottom to create the hair). Topical steroids obviously supress the immune system and are anti inflammatory. Essential oils are also anti inflammatory if you use the right ones.
What about just waiting for it to improve?
It's been eight months for me and it hasn't gotten worse, so will simply waiting do anything in your opinion?
By the way, here's a classic example of what I've seen all along in my experience with this topic. You get various different answers (which can't all be correct) about the cause and the appropriate treatment of the condition. Who knows what they're talking about? Who's full of shit? Who knows.
I'm not saying anyone in particular here is wrong, and I'm not trying to start any arguments here, but I'm just pointing out that it's all the conflicting information out there that makes this so hard.
I'm not trying to sound big headed but i know i'm right.... I have had tane induced hairloss for over 2 years and have been to the number one derm in Europe (Professor Anthony Chu). I am still under his care and i see him every 6 months.
He told it to me straight, it's either telogen effluvium or diffuse AA. When it is diffuse AA what i describe above is true. With TE you won't get the minuturzation or inflammation.
That isn't to say that if you have Diffuse AA you won't recover, because you can.... I'm just telling it how it is. I have gone through great efforts to fully understand what has been done to my body post tane and i think i know as much as anyone out there.
Alot of people skim over this thread and/or do some quick reading on google and come to their own conclusions, which are often far out.
I found out what i had, i have tried dozens of different things to treat it and i know why some things work and others don't.
8 Months in you still have a chance at recovery so i wouldn't worry just yet. The above treatments will work with varying success rates, but a combination of the above will help significantly in most cases.
So what are the chances my hair goes back to normal without doing anything? I haven't even finished accutane so should I at least wait some months to see what happens after?
Also Thulsa, my bangs are pretty much just thinner frizzy shit too and I push them to one side. I am wondering about just stopping my course now. I have like 20 days left, I've been clear for about two months. Would it help at all to stop this late or should I just finish my course?
lamarr, you say that at eight months I still have a chance to recover and not to worry - just to clarify, do you mean I have a chance to recover if I actively do the things you mention, or I have a chance to recover if I do nothing and just wait?
volcom, I can't give you a firm answer - to continue or stop, but in my case, I stopped Accutane because of the side effects, one of which was the hair issue. For me, it wasn't Accutane that cured my acne anyway; I finally cured myself by altering my diet. But if it were me, I'd stop taking it. Your doctor will probably object to this, but just stand up to him / her if that's your decision. After all, it's your hair, skin, etc., and your life that's affected here, not theirs. 20 days may not make a huge difference in improving your skin or in worsening side effects, but you're obviously concerned about side effects already, so I'd stop and not push it any further. I've learned the hard way that doctors usually think they know a hell of a lot more than they actually know.
That's just my advice.
lamarr, you say that at eight months I still have a chance to recover and not to worry - just to clarify, do you mean I have a chance to recover if I actively do the things you mention, or I have a chance to recover if I do nothing and just wait?volcom, I can't give you a firm answer - to continue or stop, but in my case, I stopped Accutane because of the side effects, one of which was the hair issue. For me, it wasn't Accutane that cured my acne anyway; I finally cured myself by altering my diet. But if it were me, I'd stop taking it. Your doctor will probably object to this, but just stand up to him / her if that's your decision. After all, it's your hair, skin, etc., and your life that's affected here, not theirs. 20 days may not make a huge difference in improving your skin or in worsening side effects, but you're obviously concerned about side effects already, so I'd stop and not push it any further. I've learned the hard way that doctors usually think they know a hell of a lot more than they actually know.
That's just my advice.
I'm gonna go pill every 2 days until my date with the derm. That way it's a compromise.
lamarr, you say that at eight months I still have a chance to recover and not to worry - just to clarify, do you mean I have a chance to recover if I actively do the things you mention, or I have a chance to recover if I do nothing and just wait?volcom, I can't give you a firm answer - to continue or stop, but in my case, I stopped Accutane because of the side effects, one of which was the hair issue. For me, it wasn't Accutane that cured my acne anyway; I finally cured myself by altering my diet. But if it were me, I'd stop taking it. Your doctor will probably object to this, but just stand up to him / her if that's your decision. After all, it's your hair, skin, etc., and your life that's affected here, not theirs. 20 days may not make a huge difference in improving your skin or in worsening side effects, but you're obviously concerned about side effects already, so I'd stop and not push it any further. I've learned the hard way that doctors usually think they know a hell of a lot more than they actually know.
That's just my advice.
The diffuse AA can stop within 2 years post, so thats why i say not to worry just yet. When i say recover i mean without my treatments.
The reason i didn't ever think i would recover is because of the long list of other side effects i obtain from my course of tane. Some people recover after 5 years so but that is pretty rare.... When i say recover i mean the shedding lets up and your hair doesn't get any worse.
Waiting up to a year isn't a bad idea, anything after that PERSONALLY i would start doing something about it....depends how much it bothers you though.
So what are the chances my hair goes back to normal without doing anything? I haven't even finished accutane so should I at least wait some months to see what happens after?
Also Thulsa, my bangs are pretty much just thinner frizzy shit too and I push them to one side. I am wondering about just stopping my course now. I have like 20 days left, I've been clear for about two months. Would it help at all to stop this late or should I just finish my course?
You have a good chance of recovery but the longer you stay on tane the less chance you will have for a full recovery.
Chances are you will be ok.
Hey Lamarr,
Do you think stopping 20 days early would be a mistake? I think I'm going to do it. Like I said I've been clear for 2 months, and I was on 80mg for a month and a half so I'm sure the strength had an effect on me. I don't really see how 20 more days would help me that much, but maybe one every two days is better than every day.
It would be about 5 months on at least 40 mg each month, so I probably reached my cumulative dose already! My derm kept saying that I should just do it because "I don't want it to come back". Well no shit I don't want acne coming back, but 20 more days? Meh, maybe I'll stop on Christmas or something lol.