3363 replies to this topic

[oli girl]

 

 

 

What about if you have various other side effects associated with the extreme dryness of your hair & skin? 

 

These effects came on after I finished the medication. Is anyone else experiencing this??

 

have you seen a dr about your hairloss? are you trying prescription treatments or steroid injections to the scalp? have you gotten your hormones checked? your cortisol? something is out of wack.

Ive seen 2 dermatoligists,an endocrinoligist,a homepath, a naturopath, 2 GP's and had every test you could think of.Im too scared to take any other medications or do anything to my body as since coming off the medications everything has progressively gotten dryer and dryer with no end in sight, these effects will not subside & I dont know what to do. Im watching my skin shrivel up and become like an old persons and my hair is dead and has continually fallen out for over 2 years now

If you've gotten advice from drs and are recommended medication that can help you, why aren't you taking it? I know you're scared of putting more stuff in your body, but if you aren't addressing your problems then they're just going to keep happening. 

Because just like accutane the recommended treatments are so damaging to our bodies in themselves - I cannot use rogain or the like as now I am growing hair all over my face & body from accutane- It also ages the skin which I am already having huge issues with from Accutane due to the severity of the dryness

The Pill is the other option - synthetic hormones which I tried for 3 mnths and everything increasingly got worse.

Steroid injections also have side effects such as thinning of the skin which I cannot risk.

 

I think that once once you are losing your hair and the dryness and irritation or your skin/hair/organs being severely affected by accutane, there really is minimal options available to reverse these symptoms - my hairloss includes eye brows & lashes as well which is possibly diffuse alopecia areata .

 

Since this started 4 weeks after stopping the medication I have tried every natural therapy possible...

Livetoregret - Hey sweetie are they keeping a check on you and some of the abnormal labs you have had? I know that some have gone from abnormal to normal to abnormal. I do feel that you have a thyroid and some other autoimmune conditon from accutane. Now if you just feel you have Alopecia and nothing elese due to Accutane then you can read some of Lamarr1986 posts in this thread a way back for advice. I read about your few hrs of sleep and I can attest before I got a dx on my thyroid and sjrogrens I did only sleep maybe 2-4 hrs a night if that! 

 

Also stress & anxiety will make things worse such as hairloss!

Edited by oli girl, 31 January 2013 - 03:39 PM.

[Livetoregret]

 

 

 

 

What about if you have various other side effects associated with the extreme dryness of your hair & skin? 

 

These effects came on after I finished the medication. Is anyone else experiencing this??

 

have you seen a dr about your hairloss? are you trying prescription treatments or steroid injections to the scalp? have you gotten your hormones checked? your cortisol? something is out of wack.

Ive seen 2 dermatoligists,an endocrinoligist,a homepath, a naturopath, 2 GP's and had every test you could think of.Im too scared to take any other medications or do anything to my body as since coming off the medications everything has progressively gotten dryer and dryer with no end in sight, these effects will not subside & I dont know what to do. Im watching my skin shrivel up and become like an old persons and my hair is dead and has continually fallen out for over 2 years now

If you've gotten advice from drs and are recommended medication that can help you, why aren't you taking it? I know you're scared of putting more stuff in your body, but if you aren't addressing your problems then they're just going to keep happening. 

Because just like accutane the recommended treatments are so damaging to our bodies in themselves - I cannot use rogain or the like as now I am growing hair all over my face & body from accutane- It also ages the skin which I am already having huge issues with from Accutane due to the severity of the dryness

The Pill is the other option - synthetic hormones which I tried for 3 mnths and everything increasingly got worse.

Steroid injections also have side effects such as thinning of the skin which I cannot risk.

 

I think that once once you are losing your hair and the dryness and irritation or your skin/hair/organs being severely affected by accutane, there really is minimal options available to reverse these symptoms - my hairloss includes eye brows & lashes as well which is possibly diffuse alopecia areata .

 

Since this started 4 weeks after stopping the medication I have tried every natural therapy possible...

Livetoregret - Hey sweetie are they keeping a check on you and some of the abnormal labs you have had? I know that some have gone from abnormal to normal to abnormal. I do feel that you have a thyroid and some other autoimmune conditon from accutane. Now if you just feel you have Alopecia and nothing elese due to Accutane then you can read some of Lamarr1986 posts in this thread a way back for advice. I read about your few hrs of sleep and I can attest before I got a dx on my thyroid and sjrogrens I did only sleep maybe 2-4 hrs a night if that! 

 

Also stress & anxiety will make things worse such as hairloss!

Hey jen,

Ive read alot of lamarr's posts, I have alot of accumulating issues now as time goes on...

I just do not trust doctors I have taken all these issues to them and now been through 2 primary care GP's as they say they cannot help me.

Im terrified and have nowhere to turn..

 

I have so far:

Alopecia of hair/eyebrows/lashes

Joint pains in wrists,knees and shoulders

The dry, thin,red irritated skin I think its turning into rosacea I am red ALL the time I used to have the palest skin you could imagine..

I know stress makes hairloss worse but honestly I am falling apart and just do not know what the hell to do anymore. There seems to be no help out there no matter how hard I look

[bcbcbc]

Did anyone hear about someone that ACTUALLY went bald due to accutane?  

 

I don't think I have heard of anyone going complete bald due to accutane.

 

I've read in clinical literature that people don't go bald from chronic telogen effluvium since hair growth rate and shed rate are similar.

 

I also read that it usually results in "spontaneous resolution" in 3-10 years.  

 

I guess I don't mind waiting 10 years as long as I know that I won't go bald.  

Edited by bcbcbc, 31 January 2013 - 09:29 PM.

[oli girl]

Did anyone hear about someone that ACTUALLY went bald due to accutane?  

 

I don't think I have heard of anyone going complete bald due to accutane.

 

I've read in clinical literature that people don't go bald from chronic telogen effluvium since hair growth rate and shed rate are similar.

 

I also read that it usually results in "spontaneous resolution" in 3-10 years.  

 

I guess I don't mind waiting 10 years as long as I know that I won't go bald.  

No I don't know of anyone going completly bald, I do know on the old ragfourm there was guy who had hairloss really bad and he decide enough was enough and shaved his head. However, he didn't look bad bald! Is hairloss all you suffer from?

 

 

 

 

 

What about if you have various other side effects associated with the extreme dryness of your hair & skin? 

 

These effects came on after I finished the medication. Is anyone else experiencing this??

 

have you seen a dr about your hairloss? are you trying prescription treatments or steroid injections to the scalp? have you gotten your hormones checked? your cortisol? something is out of wack.

Ive seen 2 dermatoligists,an endocrinoligist,a homepath, a naturopath, 2 GP's and had every test you could think of.Im too scared to take any other medications or do anything to my body as since coming off the medications everything has progressively gotten dryer and dryer with no end in sight, these effects will not subside & I dont know what to do. Im watching my skin shrivel up and become like an old persons and my hair is dead and has continually fallen out for over 2 years now

If you've gotten advice from drs and are recommended medication that can help you, why aren't you taking it? I know you're scared of putting more stuff in your body, but if you aren't addressing your problems then they're just going to keep happening. 

Because just like accutane the recommended treatments are so damaging to our bodies in themselves - I cannot use rogain or the like as now I am growing hair all over my face & body from accutane- It also ages the skin which I am already having huge issues with from Accutane due to the severity of the dryness

The Pill is the other option - synthetic hormones which I tried for 3 mnths and everything increasingly got worse.

Steroid injections also have side effects such as thinning of the skin which I cannot risk.

 

I think that once once you are losing your hair and the dryness and irritation or your skin/hair/organs being severely affected by accutane, there really is minimal options available to reverse these symptoms - my hairloss includes eye brows & lashes as well which is possibly diffuse alopecia areata .

 

Since this started 4 weeks after stopping the medication I have tried every natural therapy possible...

Livetoregret - Hey sweetie are they keeping a check on you and some of the abnormal labs you have had? I know that some have gone from abnormal to normal to abnormal. I do feel that you have a thyroid and some other autoimmune conditon from accutane. Now if you just feel you have Alopecia and nothing elese due to Accutane then you can read some of Lamarr1986 posts in this thread a way back for advice. I read about your few hrs of sleep and I can attest before I got a dx on my thyroid and sjrogrens I did only sleep maybe 2-4 hrs a night if that! 

 

Also stress & anxiety will make things worse such as hairloss!

Hey jen,

Ive read alot of lamarr's posts, I have alot of accumulating issues now as time goes on...

I just do not trust doctors I have taken all these issues to them and now been through 2 primary care GP's as they say they cannot help me.

Im terrified and have nowhere to turn..

 

I have so far:

Alopecia of hair/eyebrows/lashes

Joint pains in wrists,knees and shoulders

The dry, thin,red irritated skin I think its turning into rosacea I am red ALL the time I used to have the palest skin you could imagine..

I know stress makes hairloss worse but honestly I am falling apart and just do not know what the hell to do anymore. There seems to be no help out there no matter how hard I look

I swear you have some autoimmue thing going on! I really wish you were here in the U.S. cause I'd get you help! - I know you are done with docs and scared of other drugs, but I would try some of Lamarr's things....Look at this way it can't get any worse! I think of you often hang in there

[Livetoregret]

my hair has only grown maybe 8cm in 6 mnths - it used to grow about 2cm every 4-6 wks as I had to recolor my roots by then. Growth has halted, hair quality is thinner and incredibly fragile, bone dry and there is little to no regrowth what I do get also falls out very short fine hairs

[_Andy_]

Hello!  I am the creator of this thread, and I cannot believe that it's still going!  This thread used to be such a comfort to me, and I hope that it's been a comfort to you, too.

 

I am here to post one last time.  Here is my update:

 

 

My hair stopped shedding after 6 to 8 months.  70% of the hair that I lost came back after about 2 years.  So at least for me, I didn't get all my hair back, but I did get most of it back.

 

It's amazing to think that this happened to me almost 7 years ago.  In my opinion and experience: Accutane hair loss is truly temporary, but if you are destined to have some kind of natural hair loss  - and the vast, vast majority of people, men as well as women, are destined to lose at least some hair naturally, in one degree or another - then the temporary hair loss from Accutane will prematurely trigger your more permanent, natural hair loss.  So if you're younger, you have less to worry about.  But if you're in your early twenties, you shouldn't expect all of your hair back.  But enough of it will come back, and you will be OK with it.

 

I'm a male, and I have found the key to be this:

 

- Take Propecia.  Even if you truly don't have male pattern baldness, who cares?  What's the downside?  It costs $2 a day.  The side effects are greatly exaggerated, and if you have any questions about them, feel free to contact me.

 

- Do NOT start minoxidil.  It makes things worse and, because you need to apply it twice a day for the rest of your life, it is not a sustainable treatment.  Sure, if you're young and single, putting medicine on your scalp twice a day is easy.  But when you're older and living with your significant other, it would make you look ridiculous.

 

- BE PATIENT!  I thought it was the end of the world when this happened to me.  And now 7 years have passed.  Look at other men's hair and you'll realize that you're not the only one who has thinning hair.  HAIR LOSS IS A FACT OF LIFE.  Learn to style your hair differently; I used to cut it short and comb it forward and slightly to the side.

 

So that's it.  Please let me know if you have any questions.

Edited by _Andy_, 23 February 2013 - 12:53 PM.

[sztuka1988]

I got sick - flu - 2 days ago. I went for antibiotics. Taken 2 pills yesterday. Today i found like 200 hairs on my pillow. Many fall out during washing. Even if i touch them, open hand, no pulling - i get few in my hand. Anybody have similar experience?

 

Andy thanks for update. Good to know that people recovering from it. I am sure i won't recover. I lost like 80% of my hair on the top. This is photo from 2 months ago:

http://i48.tinypic.com/a2wx39.jpg

 

After today it is much worst. I can count my hair - seriously. I didn't cut my hair on the top since august. Now i use nanogen to cover baldness and i say it is great. Without it i would look like shit. 

 

I am shedding continuously for last 10,5 months and 16,5 in 22 months. 

Edited by sztuka1988, 23 February 2013 - 01:26 PM.

[Livetoregret]

Wow it's depressing to read that even the creator of this threads hair stopped shedding within 9 months.
I've been shedding over two years now with no end it sight, with no regrowth to speak of..and so so dry and brittle now..

I must be compleltey screwed

[redemption2501]

Hello again people

 

Long time no see. Andy, thanks for coming back to update and tell us what's going on with you! I'm really glad that you got most of your hair back and I totally agree - this is in most cases a temporary condition and most sufferers will get back to normal.

 

Also, I agree with what you are noting in regard to people losing hair in a natural way. Most people lose hair especially in their twenties/thirties, men and women, although men are a little bit more predisposed to that. Based on statistics, it seems that around 50% of the men throughout the world cary MPB and will lose most of their hair before their fifties. That's just the way life is, nothing we could do about it.

 

Anyways, I'm posting because I have some...let's say positive news.

 

My hair is better than what it was some months ago, before I started using minoxidil, flax seed, biotin and saw palmetto. I see a regrowth and also the texture has improved a bit. My mom told me that my hair is visibly better and that it feels thicker and fuller. Before starting the above supplements and minoxidil I was getting the traditional NW2 "V" shape and I was frankly terrified that this was it, my hair was dead. Now I feel much more optimistic and I am not that obsessed. it's been nearly four months since I've started the minoxidil therapy.

 

I also talked to my girlfriend and asked if she saw an improvement. She laughed and told me that I was imagining it and that I had no problem whatsoever with my hair. She actually told me that she would love to trade her hair for mine. Other people has recently complimented me on my hair as well. I guess the reason is that I just let it do what it wants and stopped cutting it. I was somewhat shocked that people actually think I have thick hair...

 

Regardless of the above said, my hair is still a lot thinner than what it was prior and during my accutane course. I still lose hairs throughout the day and during showering. I doubt that I would get it back to its state before that traumatic event but I'm very happy that I have no visible recession at least for now.

 

As a conclusion I would just like to quote what Andy has written above "BE PATIENT!". Don't expect improvements over night but nor you should wait for years to take precautions. Consult with a doctor before doing anything on your own.

 

Feel free to ask me any questions related to hair-loss. I'm at your disposal. Will never leave acne.org.

Edited by redemption2501, 25 February 2013 - 10:50 AM.

[Livetoregret]

So Im over 2 years post roaccutane.Ive been losing my hair for 2 years now since ceasing the drug.

Ive been diagnosed with chronic teolgen effulvium which can go on indefinetley there is no treatment. I just want to die.

[oli girl]

Ate they going to treat one the obvious automime your labs are showing! Then your TE will cease!

[Livetoregret]

Ate they going to treat one the obvious automime your labs are showing! Then your TE will cease!

Im told there is nothing to treat Jen..theres no cure for this just pain on pain on pain

[fundamental]

oh how it how it sucks to be back on this forum, where I was last using it 3-4 years to document what I thought was going to be a positively life changing accutane course. 

 

So a brief summary of my post accutane situation. Was on a 4 month course at 16 with a 70mg dose. Couple of weeks after finishing I experienced what I was told was telogen effluvium. However since then my hairline has drastically receded to where I have now have a norwood 3 hairline at 19. I had zero signs of MPB before I took that first accutane pill yet here I am 3 years later with this. Far to coincidental imo. Doesn't take much forum browsing to see hundreds of others experiencing this and looking at forum threads even with different topics yet the mention of MPB still popping up. Try googling 'MPB .......' with any other drug. Accutane seems to be the only one with search results and a lot. Even most of the hair loss threads mention mpb more than temporary telegon effluvium. 

 

I just want to hear from anyone who believes they're on the same road or if anyone can help with my sheer regret of taking this drug with any some evidence that accutane can't possibly cause this. ie article, doctors primary advice. It's been soul destroying watching my confidence and hair disappear month by month ever since taking something which was to help me.

Edited by fundamental, 15 March 2013 - 03:00 PM.

[Livetoregret]

I'm so glad this forum is still here can u guys pls try to update more regularly

[Livetoregret]

I'd like to know how many women are suffering from hairloss long term, I see a lot of men on this thread and only girls seem to be on the long term damage from accutane thread.

[camaroz28]

I'm a male, and I have found the key to be this:

 

- Take Propecia.  Even if you truly don't have male pattern baldness, who cares?  What's the downside?  It costs $2 a day.  The side effects are greatly exaggerated, and if you have any questions about them, feel free to contact me.

Where have I heard that before? Why don't you try to pretend you have a clue? You should send people over to Propeciahelp.com before you start recommeding an anti-androgen treatment for something cosmetic as you stated: "HAIR LOSS IS A FACT OF LIFE." So let me get this straight: You are not fine with Minoxidil because it makes you look ridiculous to rub a potion into your hair; but, it is fine to inhibit DHT because popping a pill makes you look like a BOSS? You can't make this crap up.

[redemption2501]

@fundamental

 

Hey there! I'm really sorry to hear that you are going through this, man...I feel for you.

 

I know that this is a question you have probably been asked numerous times but still - do you have MPB history in your family (from your mother's side)?

 

Stay strong!

[sztuka1988]

Small update - may be the last one. So yeah, if nobody went bald from iso i am the "lucky" one. Again -> no mpb history, great hormone levels, all minerals and vitamins great. I lost 95% of hairs on the top. Sides and back are better then that, i think 5O%, but it is getting worst fast. I don't know what happened but after flu and 2 doses of antibiotic it all went horribly wrong. I shed a lot, and i have so little. So full bald head is what my future is. I don't know what to do now...i am thinking about hair piece, wig, tattooed hair. But i don't like any of those. If bald, i will look terrible. Really, i have got small head with little acne on it. All the time during treatment for acne - not only iso - i used to say to myself - at least you have got great hair. My mom saw me today after 4 months. I asked her for honest opinion. She said that my hair look terrible and she is very sorry for me. Without nanogen i can't go out or even look in the mirror. So many years of struggle. I have got acne since...12yo. So since then, for 13 years everyday i looked in the mirror to look at sth terrible. First acne, then balding. When my hair is wet and i touch them, only touch with 1 finger, i see some hairs on my finger. I really don't know what to do...

 

Wet hair from yesterday -> http://i46.tinypic.com/2eegehj.jpg

[redemption2501]

@sztuka 1988

 

Hey bruv,

 

I've already sent you a private message but I thought about you yesterday so I wanted to drop you a few more lines. I will be frank with you. I think that you should shave your head. You will feel and look much better. Trust me, it's better to shave off the remaining hair and I am positive that you will look fine that way as opposed to now with that visible recession. This will ease you up and will lessen the stress you are experiencing at the moment. When I did the same thing last year I felt so liberated and definitely better about myself. At the end of the day, you should find a way to be at peace with yourself. Looking at falling hairs and touching them won't help one bit. On the contrary, it will make you even more self-conscious about your appearance.

 

You are a man in your prime and you should not worry to such an extent about that problem. Yes, it is unpleasant, yes, most certainly accutane has caused that but beating yourself up over it is a self-damaging thing. Do not do it!

 

Please consider what I've suggested, mate.

[bcbcbc]

Hey All,

 

Just stopping by for an update.  I'm a 29 years old male and it's been about 3 years since my accutance course.  I should mention that, there's NO history of MPB in my family, ever.

 

My hair is still very thin, lost about half inch on my hairline from the accutance course and still suffering from chronic telogen effluvium.

 

On average, I'm losing about 30-40 hairs every time I wash my hair and run my fingers through my hair.

 

I've read someone's post that you should avoid all fat soluble vitamins (A,D,E & K), not just vitamin A.  So, I'm going to try that.  I'd rather be vitamin deficient than bald! =P

 

I think putting emo oil on my scalp helped a bit but it's become too much of a hassle and gets messy during sleep, so I gave it up.

 

I hear telogen effluvium can resolve itself over the course of many years, but who the heck knows at this point.

 

Please stop by update us on your progress and help each other out, we all know losing your hair prematurely due to a drug can be a traumatic experience.