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_Andy_

The answers I got from my doctor about hair loss

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1. Is the color of the skin where you lost the hair the same color as the skin on your face?

Yes.

2. What did your doctor(s) have to say about the hair loss?

I've seen 3 dermatologists and a trichologist about it. All the derms pretty much deffend ro(accutane) and claim that it couldnt be the accutane causing it and that it must just be my genetics or other events etc. I actually got very insulted when they tried to dismiss the problem like they do so i really argued with them and slammed them with all the indicators that what they are saying is false (NO history of MPB on either side of family, it occuring straight after accutane and at such as rapid pace, and the plethora of information and accounts of it all over the internet) but they really have no answer for it.

The trichologist i saw was much more accepting of the casue, and he personally had seen many cases of the same accutane hair loss from clients he had seen in the past. He examined my hair under a microscopic camera where i was able to look at the screen while he did it. Interestingly, i had minor inflamation (a little red ring) around my hair follicles. Men often have this on the top of their scalp follciles (even if they do not suffer from MPB), but i had it on my follicles ALL over my scalp. He was quiet perplexed by this and asked if he could store images of it becuase he had never seen it before.

3. Did you ever stop shedding?

No. The shedding has been massive constantly for the entire period.

THe more important thing that i have learned to focus on is not the actual shedding but the cosmetic changes in my hair. I stress that my hair has only thinned very gradually after the first year post accutane, so obviosuly a lot of the hair that falls grows back.

4. When you did shed, how much did you shed in one day?

I cant tell you how much hair i shed in the first year after taking accutane when my hair deteriorated the worst. I only noticed and became concerned with it after that period.

Anyways i would say that on an average day i woudl lose 100-200 hairs. If i put a comb once through my hair after not washing it for a day i often have like 30-50 hairs in the comb.

5. While on Accutane, do you remember blushing more easily than usual?

nope, but i do remember these things and still suffer from them now. they started happening straight after accutane.

* My hands and feet are really sensitive to the cold and go purple and stuff when its cold. I think its a condition called Raynaud's Phenomenon. http://en.wikipedia.org/wiki/Raynaud's_phenomenon

* Dry eyes

* really prone to cold sores

i've come accross ex-accutane users which have similar permanent side effects.

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1. Is the color of the skin where you lost the hair the same color as the skin on your face?

Yes.

2. What did your doctor(s) have to say about the hair loss?

I've seen 3 dermatologists and a trichologist about it. All the derms pretty much deffend ro(accutane) and claim that it couldnt be the accutane causing it and that it must just be my genetics or other events etc. I actually got very insulted when they tried to dismiss the problem like they do so i really argued with them and slammed them with all the indicators that what they are saying is false (NO history of MPB on either side of family, it occuring straight after accutane and at such as rapid pace, and the plethora of information and accounts of it all over the internet) but they really have no answer for it.

The trichologist i saw was much more accepting of the casue, and he personally had seen many cases of the same accutane hair loss from clients he had seen in the past. He examined my hair under a microscopic camera where i was able to look at the screen while he did it. Interestingly, i had minor inflamation (a little red ring) around my hair follicles. Men often have this on the top of their scalp follciles (even if they do not suffer from MPB), but i had it on my follicles ALL over my scalp. He was quiet perplexed by this and asked if he could store images of it becuase he had never seen it before.

3. Did you ever stop shedding?

No. The shedding has been massive constantly for the entire period.

THe more important thing that i have learned to focus on is not the actual shedding but the cosmetic changes in my hair. I stress that my hair has only thinned very gradually after the first year post accutane, so obviosuly a lot of the hair that falls grows back.

4. When you did shed, how much did you shed in one day?

I cant tell you how much hair i shed in the first year after taking accutane when my hair deteriorated the worst. I only noticed and became concerned with it after that period.

Anyways i would say that on an average day i woudl lose 100-200 hairs. If i put a comb once through my hair after not washing it for a day i often have like 30-50 hairs in the comb.

5. While on Accutane, do you remember blushing more easily than usual?

nope, but i do remember these things and still suffer from them now. they started happening straight after accutane.

* My hands and feet are really sensitive to the cold and go purple and stuff when its cold. I think its a condition called Raynaud's Phenomenon. http://en.wikipedia.org/wiki/Raynaud's_phenomenon

* Dry eyes

* really prone to cold sores

i've come accross ex-accutane users which have similar permanent side effects.

Holy shit, Julius. You have lupus. Inflammation of the hair follicles, hands and feet sensitive to cold, and cold sores.

And people lose hair with lupus.

Check it out. Maybe I'm crazy, but check it out.

1. Is the color of the skin where you lost the hair the same color as the skin on your face?

Yes.

2. What did your doctor(s) have to say about the hair loss?

I've seen 3 dermatologists and a trichologist about it. All the derms pretty much deffend ro(accutane) and claim that it couldnt be the accutane causing it and that it must just be my genetics or other events etc. I actually got very insulted when they tried to dismiss the problem like they do so i really argued with them and slammed them with all the indicators that what they are saying is false (NO history of MPB on either side of family, it occuring straight after accutane and at such as rapid pace, and the plethora of information and accounts of it all over the internet) but they really have no answer for it.

The trichologist i saw was much more accepting of the casue, and he personally had seen many cases of the same accutane hair loss from clients he had seen in the past. He examined my hair under a microscopic camera where i was able to look at the screen while he did it. Interestingly, i had minor inflamation (a little red ring) around my hair follicles. Men often have this on the top of their scalp follciles (even if they do not suffer from MPB), but i had it on my follicles ALL over my scalp. He was quiet perplexed by this and asked if he could store images of it becuase he had never seen it before.

3. Did you ever stop shedding?

No. The shedding has been massive constantly for the entire period.

THe more important thing that i have learned to focus on is not the actual shedding but the cosmetic changes in my hair. I stress that my hair has only thinned very gradually after the first year post accutane, so obviosuly a lot of the hair that falls grows back.

4. When you did shed, how much did you shed in one day?

I cant tell you how much hair i shed in the first year after taking accutane when my hair deteriorated the worst. I only noticed and became concerned with it after that period.

Anyways i would say that on an average day i woudl lose 100-200 hairs. If i put a comb once through my hair after not washing it for a day i often have like 30-50 hairs in the comb.

5. While on Accutane, do you remember blushing more easily than usual?

nope, but i do remember these things and still suffer from them now. they started happening straight after accutane.

* My hands and feet are really sensitive to the cold and go purple and stuff when its cold. I think its a condition called Raynaud's Phenomenon. http://en.wikipedia.org/wiki/Raynaud's_phenomenon

* Dry eyes

* really prone to cold sores

i've come accross ex-accutane users which have similar permanent side effects.

Holy shit, Julius. You have lupus. Inflammation of the hair follicles, hands and feet sensitive to cold, and cold sores.

And people lose hair with lupus.

Check it out. Maybe I'm crazy, but check it out.

http://lupus.webmd.com/guide/Lupus-Systemi...atosus-Symptoms

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"Holy shit, Julius. You have lupus. Inflammation of the hair follicles, hands and feet sensitive to cold, and cold sores. "

That is exactly what i thought at one stage as well! I agree that all the symtoms i have described point to an autoimmune cause, and i do think that this may be the underlying mechanism that was triggered by accutane causing my hair loss etc.

In 2004 I went to see an Immunologist to discuss this exact point. I was put through a barrage of blood tests (had to go to the hospital to get blood done because they needed 25 or so vials for the tests! some had to be instantly frozen and stuff it was pretty crazy) and some other imaging tests. Was fully examined for rashes and all sorts of things. The results were all negative and they were unable to find evidence of any identifiable autoimmune conditions.

Most forms of hair loss involve the immune system.

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julius said:
"Holy shit, Julius. You have lupus. Inflammation of the hair follicles, hands and feet sensitive to cold, and cold sores. "

That is exactly what i thought at one stage as well! I agree that all the symtoms i have described point to an autoimmune cause, and i do think that this may be the underlying mechanism that was triggered by accutane causing my hair loss etc.

In 2004 I went to see an Immunologist to discuss this exact point. I was put through a barrage of blood tests (had to go to the hospital to get blood done because they needed 25 or so vials for the tests! some had to be instantly frozen and stuff it was pretty crazy) and some other imaging tests. Was fully examined for rashes and all sorts of things. The results were all negative and they were unable to find evidence of any identifiable autoimmune conditions.

Most forms of hair loss involve the immune system.

So you tested negative for lupus? At the very least, you have some form of vasculitis, where blood was unable to flow to the skin on your head. If the follicles were deprived of blood and the nutrients therein, perhaps they were destroyed? I'm sorry to put it so bluntly, but have you considered this?

[Edited link out]

Damn Accutane.

Edited by Ishayat
Edited link out - link was broken
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Funny you lot should mention the auto immune factor, my father was going on about my ulcers i seen to have rather frequently since finishing accutane, he asked me if accutane could induce anything like that, and i said that i didn't think so!!. They seem to be slowly subsideing mind you and i actually have periods where i don't have any, where as a few months ago i would have 5 at a time.

I have no problems with anything else though now, no dry eyes or anything

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Funny you lot should mention the auto immune factor, my father was going on about my ulcers i seen to have rather frequently since finishing accutane, he asked me if accutane could induce anything like that, and i said that i didn't think so!!. They seem to be slowly subsideing mind you and i actually have periods where i don't have any, where as a few months ago i would have 5 at a time.

I have no problems with anything else though now, no dry eyes or anything

Perhaps we should approach the hair loss as a symptom of another Accutane side effect.

I think we should all put on the table what other side effects we had from Accutane, excluding of course general dryness.

I had none, except perhaps a feeling of detachment.

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We would be here all day if i did that....No joke,

Depression, skin sensitivity, brain swelling, blurrered vision, severe lack of concentration, for the last week of my course i did actually have really dry eyes, but that went away instantly when i stopped, the blurrered vision went away with discontiuation, and i seem pretty much normal at the moment, other than the odd ulcer and the hairloss of course.

Now, this is slightly worrying due to the fact my head has been more itchy than ever the last few days (could be due to inflamation at the hair follicle), it may well be down to over use of nizoral tho... I was using it every day, last week i used it twice in one day...

Julius, have you ever tried a topical immune suppressant? (non hydrocortizine), also is your scalp very itchy?

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i talked to my mom and apparently she's had TE twice in her life. once after giving birth and another due to stress. so i'm wondering if i'm more genetically prone to TE? i'm approaching my fourth month of hair loss and being post accutane and still losing hair. ; \

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Julius, my father says, have you been on a short course of steroids? he said that can quite often knock an autoimmune response on the head, especially if you don't have an uderlying condition. He also asked do you have typical symptoms of sicca syndrome? My dad has a vast medical background btw.

i talked to my mom and apparently she's had TE twice in her life. once after giving birth and another due to stress. so i'm wondering if i'm more genetically prone to TE? i'm approaching my fourth month of hair loss and being post accutane and still losing hair. ; \

My mum has also had it twice, both due to child birth, she said it lasted 3 months for her!!

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We would be here all day if i did that....No joke,

Depression, skin sensitivity, brain swelling, blurrered vision, severe lack of concentration, for the last week of my course i did actually have really dry eyes, but that went away instantly when i stopped, the blurrered vision went away with discontiuation, and i seem pretty much normal at the moment, other than the odd ulcer and the hairloss of course.

Now, this is slightly worrying due to the fact my head has been more itchy than ever the last few days (could be due to inflamation at the hair follicle), it may well be down to over use of nizoral tho... I was using it every day, last week i used it twice in one day...

Julius, have you ever tried a topical immune suppressant? (non hydrocortizine), also is your scalp very itchy?

David, how about you? What other side effects did you have during or after Accutane, besides dryness and hair loss?

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I'm not getting overly excited, but my dad often seems to diagnose problems very well (he is currently a dentist, but also qualified as a GP). If there is inflamation around each and every follicle and you have the other symptoms you stated julius, if you haven't tried a course or oral steroids, that could well definenelty be your answer!! if not then a topical immune suppressant could do the job.

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We would be here all day if i did that....No joke,

Depression, skin sensitivity, brain swelling, blurrered vision, severe lack of concentration, for the last week of my course i did actually have really dry eyes, but that went away instantly when i stopped, the blurrered vision went away with discontiuation, and i seem pretty much normal at the moment, other than the odd ulcer and the hairloss of course.

Now, this is slightly worrying due to the fact my head has been more itchy than ever the last few days (could be due to inflamation at the hair follicle), it may well be down to over use of nizoral tho... I was using it every day, last week i used it twice in one day...

Julius, have you ever tried a topical immune suppressant? (non hydrocortizine), also is your scalp very itchy?

David, how about you? What other side effects did you have during or after Accutane, besides dryness and hair loss?

I agree with Lamarr that that might be an answer. I'm really interested in this theory.

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We would be here all day if i did that....No joke,

Depression, skin sensitivity, brain swelling, blurrered vision, severe lack of concentration, for the last week of my course i did actually have really dry eyes, but that went away instantly when i stopped, the blurrered vision went away with discontiuation, and i seem pretty much normal at the moment, other than the odd ulcer and the hairloss of course.

Now, this is slightly worrying due to the fact my head has been more itchy than ever the last few days (could be due to inflamation at the hair follicle), it may well be down to over use of nizoral tho... I was using it every day, last week i used it twice in one day...

Julius, have you ever tried a topical immune suppressant? (non hydrocortizine), also is your scalp very itchy?

David, how about you? What other side effects did you have during or after Accutane, besides dryness and hair loss?

dry lips was really my worse side effect before this. my face would have the accutane redness and of course the dryness of the skin, but i can't really say that i've had many side effects besides this one.

funny enough, i develop hardly any side effects and get the worse one towards the end of my course. go figure.

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funny enough, i develop hardly any side effects and get the worse one towards the end of my course. go figure.

You will be fine then, i'm sure of it, just hang in there...

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davidhatesacne, and mypoorhair and the guy with the red hair, i can't remeber his name. I think all of you will be fine.

Me and ithappens on the other hand im not sure on. Reason why i think it may be something more than TE with me is the itching, when my scalp isn't dry at all (i have never had dandruff in my life) Accutane didn't give me dandruff either. I will try cutting back on the washing though...

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davidhatesacne, and mypoorhair and the guy with the red hair, i can't remeber his name. I think all of you will be fine.

Me and ithappens on the other hand im not sure on. Reason why i think it may be something more than TE with me is the itching, when my scalp isn't dry at all (i have never had dandruff in my life) Accutane didn't give me dandruff either. I will try cutting back on the washing though...

I'm sure you and Ithappens will be fine as well. If my hair grows back, I am going to set up a website about Accutane hair loss to support future sufferers. I feel the theories we explore on this thread are really useful and unlike anything that can be found on other sites.

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davidhatesacne, and mypoorhair and the guy with the red hair, i can't remeber his name. I think all of you will be fine.

Me and ithappens on the other hand im not sure on. Reason why i think it may be something more than TE with me is the itching, when my scalp isn't dry at all (i have never had dandruff in my life) Accutane didn't give me dandruff either. I will try cutting back on the washing though...

I'm sure you and Ithappens will be fine as well. If my hair grows back, I am going to set up a website about Accutane hair loss to support future sufferers. I feel the theories we explore on this thread are really useful and unlike anything that can be found on other sites.

that's actually a good idea. i know, like most of you guys, the first thing i did when i started seeing the hair loss is search google. something like that could really give hope, because it seems like a lot of people get scared, post something, then never post again. people don't ever post good results. if there was a sense of community, like here, people would feel the urge to post results. i know i will when this is all said and done.

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davidhatesacne, and mypoorhair and the guy with the red hair, i can't remeber his name. I think all of you will be fine.

Me and ithappens on the other hand im not sure on. Reason why i think it may be something more than TE with me is the itching, when my scalp isn't dry at all (i have never had dandruff in my life) Accutane didn't give me dandruff either. I will try cutting back on the washing though...

I'm sure you and Ithappens will be fine as well. If my hair grows back, I am going to set up a website about Accutane hair loss to support future sufferers. I feel the theories we explore on this thread are really useful and unlike anything that can be found on other sites.

that's actually a good idea. i know, like most of you guys, the first thing i did when i started seeing the hair loss is search google. something like that could really give hope, because it seems like a lot of people get scared, post something, then never post again. people don't ever post good results. if there was a sense of community, like here, people would feel the urge to post results. i know i will when this is all said and done.

Yes, in fact, that'd be part of the agreement. To join, you'd have to promise to report back.

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I will 100% come back and post anything positive i have to report, and setting up a site to support others would be good aswell. Infact a site to support any serious side effects from accutane may be a good idea!!

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that's actually a good idea. i know, like most of you guys, the first thing i did when i started seeing the hair loss is search google. something like that could really give hope, because it seems like a lot of people get scared, post something, then never post again. people don't ever post good results. if there was a sense of community, like here, people would feel the urge to post results. i know i will when this is all said and done.

How is your loss coming along David? do you notice any regrowth yet? has it sped up or slowed down at all?

i have minimal regrowth, nothing major at all though. I was doing more research the other day and many Dr's believe that shedding is not simply down to new hairs pushing out the old ones, it can be, but not always...

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I think one of us should do a post, i don't like how many people are getting worried about hairloss now. That isn't what i want to achieve by keeping this thread alive. There are alot of posts being made concerning hairloss but we all know we have just been very unlucky!!

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Lamar brings up an interesting point because the whole range of accutane side effects i believe is linked to this rise in TGF BETA signaling it just makes sense because a rise in TGF BETA throughout the body has been to cause hair loss, lupus, chronis fatigue, blurred vision etc and accutane and various other retinoids used to treat cancer do just that raise TGF BETA levels in order to stop cell growth. it would be interesting to see if some sort of oral steroid actually is the cure, and i do agree that are actual hair loss could be more of a fact of our bodies just responding to something else that is wrong with us now from taking accutane.

As far as the actual side effects that i had on the drug they were very minimal. i had severe chapped lips, dry skin, and some hair loss but it was minor and wasn't and all out mass shed. i wouldn't even say that the stuff really affected me mentally granted i was having trouble in school but i take that into account of being in season with soccer and taking 5 tough classes. after accutane though that's when my side effects have now kicked in. I have eye floaters, i feel fatigued throughout the day, and i am having trouble sleeping granted my three weeks on propecia may have affected the sleep as i ahd no trouble prior to that. i am depressed and have anxiety but i attribute that to my hair situation. I do also feel that somehow this all linked maybe at least in some sort of way.

As far as recovering i promise and will post pictures hopefully tomorrow, but i would first assume that david you'll recover. you stopped treatment once you noticed your hair loss while as myself i finished the entire course losing hair throughout and even with the mass shed towards the last month stayed on it. plus you look like you have a very thick full set of hair so at the very worse you get your hair loss to stop and return to normal even with no regrowth you should be ok. i'm very familar with mypoorhair's situation and while i'm certain he'll recover in the sense that he has already seen the hair loss stop i can't say whether he will have any regrowth. but as far as getting the hair loss to stop that's the first step towards recovering so he has a pretty good chance as far as i'm concerned. i can't comment on lamar's situation as i'm not familar with it. the thing is with my situation is this i can't conclude that the amount of hair i lost or the total situation is worse than anyone on here it's not as bad as julius's yet granted his has been going on for years, but as far as others go i cant really comment. what i can say is that from the pictures i will post you can see and how damaged and changed in texture my actual hair is now compared to what is preaccutane. i used to have thick really nice hair. it fell in place perfectly looked good etc. my friends now have dubbed what i have as "mad scientist" hair it's thin weak and wirery and it sticks up everywhere and just looks a mess. most of all the once straight hair i had has literally curled up i now have long curly wavey hair. i guess i wouldnt care as much if it wasnt falling out but it is. while i still have my front hairline the hair directly behind it has become more and more diffused recently and also i've started to lose more hair on the back vertex of my head, and it just isn't looking good. lamar i also have been using nizoral and while it does seem to help with the texture and feel of the hair i don't know how much anymore it really helps the actual hair loss. my scalp gets irriatated when i use and i do notice i itch a lot more when on it plus i get these red inflamed spots on my scalp. my derm said before it really doesn't matter what shampoo i use the hair will most likely fall out if it's going to fall out and he's probably right. at this point i had so much hair to begin with and have lost so much over this period that i guess most other people would be in really bad shape with how it looks right now but i can still get by. i use toppik to cover the very thin vertex at the back and have been wearing my hair somewaht shorter in the front. it doesn't look good at all but it's still not at the point where people can tell i'm losing hair yet. i just need another month to sort everything out before i decide if i want to go back on propecia or not. i had bad side effects last time and if i go back on i plan on taking some sort of anti-estrogen drug to combat the effects of it.

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i think making a website too would also be a good idea. i would also like to add that at some point in the future once i get a grasp on exactly where my situation is headed i plan on making a petition to the FDA about accutane and how dermotologists adminster and prescribe it because, while i'm not against accutane, i do feel it needs to be changed. The that needs to be addressed in the medical industry with accutane as well as many drugs is that we have doctors prescribing us drugs with little to no information on the way they work, studies that have been conducted, and various side effects that go along with them. For example, we have derms prescribing us accutane yet they seem to know very little about the drug and how it works besides the fact that it supresses acne. i feel that the doctor's who are in charge of adminstering and prescribing the drugs should be forced to literally be licensed to prescribe them. they should have to take some sort of educational classes, read up on the various latest studies associated with them, and be more responsible when prescribing them. Like i said before i am not against accutane but i do feel it is a very widely misunderstood and over prescribed drug and someone really needs to take a look at what is going on with it. I think that the dose is way too high and most people don't really need to go over 20mg, and i also feel that the dose is very very weight dependant. this would make sense as the majority of people that i have come across who have side effects seem to be women or smaller guys like myself. i just think that the whole accutane and overall drug industry needs to change in this way, it's not comforting to know that i know more about the drug, much much more, than many of the doctors prescribing it. yea i know this is wishful thinking but someone needs to start somewhere with it.

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lamarr1986 said:
davidhatesacne, and mypoorhair and the guy with the red hair, i can't remeber his name. I think all of you will be fine.

Me and ithappens on the other hand im not sure on. Reason why i think it may be something more than TE with me is the itching, when my scalp isn't dry at all (i have never had dandruff in my life) Accutane didn't give me dandruff either. I will try cutting back on the washing though...

I think thats a REALLY good idea. There used to exist two good sites dedicated to accutane side effects.

the first used to be www.ragforum.com, but no longer has that domain name (probably what has contributed to it becoming much less active). It still exists here

[Edited link out]

the second was www.roaccutanesurvivors.com ... this site has been taken down, probably becasue of the costs to the operaters of running it.. It was up for several years, and archives of the old site can still be veiwed using the wayback engine.. This links should take you there

http://web.archive.org/web/20040318080211/...esurvivors.com/

Edited by Ishayat
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just stumbled accross links to 2 more of the old hairsite forums on accutane hair loss.. these are FULL of peoples experiences with accutane hair loss... note how many females experiene accutane hair loss exactly the same as males.

[Edited link out]

[Edited link out]

Edited by Ishayat
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