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chicanery

My (F19) accutane telogen effluvium journey (PICS)

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Did anyone ever combed their hair and watch 50 strands of hair pulls right out with one single stroke of the comb? :)
 I have less hair shed these days, maybe even less that 100 (if I dont comb my hair!) but I know some of my follicles are toast permanently. but hopefully the ones that I currently have survive. The concerning part is that I see very thin and short hair (1/4"ish) sheds. Before I used to see both thick, long hair  and thin, short hair sheds. now just thin short hair sheds. donno what that means. :S  
Also my hair feels so loose, if I ran my fingers through my hair 4,5 hairs pulls out!

Edited by A1992

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I could comb my Hair and watch 200 hairs fall out! Lol it’s so bad :( I really don’t know how we are not all bald by now :( I went back to my derm last week for my skin and she said it’s bad enough to need accutane again :( I do however see teeny tiny hairs I think they are from minoxidil? But not sure? They are literally tiny tho and thin

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18 hours ago, MeritNorth said:
@[email protected] that's great! Could you share which shampoo you're using? 

Has anyone tried onion/coconut oil treatments for hair growth? I have heard onions are supposed to be great at stimulating growth as well. 
I have tried the onion but didn’t have much success! It stung my scalp and smelled for days :( coconut oil is nice and soothing for the scalp tho! Apparently green tea helps with shedding too! I might try that! 

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i'm convinced I have alopecia areata, presenting itself in a diffuse way on my scalp. I've just noticed that I have lost nearly HALF of the hair on my legs. However, this loss isn't diffuse like on my head - it is PATCHY CIRCLES where i have ZERO leg hair. Each circle is around 3 inches wide. Very significant hair loss. 

I have also lost over half of the rest of my body hair.

It  all just sheds about 4x as much as it should, on a daily basis. I'm so lucky that my eyebrows and eyelashes haven't been affected.

I'm currently back to heavy shedding (head hair), too, which is SO depressing. 90% of the hairs i'm losing are the small regrowth hairs that minoxidil gave me :(. 

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8 hours ago, chicanery said:

i'm convinced I have alopecia areata, presenting itself in a diffuse way on my scalp. I've just noticed that I have lost nearly HALF of the hair on my legs. However, this loss isn't diffuse like on my head - it is PATCHY CIRCLES where i have ZERO leg hair. Each circle is around 3 inches wide. Very significant hair loss. 

I have also lost over half of the rest of my body hair.

It  all just sheds about 4x as much as it should, on a daily basis. I'm so lucky that my eyebrows and eyelashes haven't been affected.

I'm currently back to heavy shedding (head hair), too, which is SO depressing. 90% of the hairs i'm losing are the small regrowth hairs that minoxidil gave me :(. 

this is awful :( do u really think it could be alopecia? i loose hair sometimes from my eyebrows and eyelashes but i think that happened even before i took accutane! if you really do think u have alopecia then should you get a biopsy to confirm it? I gave up the minoxidil...it was driving my scalp crazy and the hair loss was excessive on it! My hair loss has slowed down a bit now i think.....probably around the same as what it was before i started the minoxidil! 

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@[email protected] How long have you been off of Accutane? I have some small baby hairs but still shedding the same. I'm going to see if I can get some similar shampoo in the US.  Glad to hear positive news! 

@chicanery I'm sorry to hear that! Have you seen a doctor/specialist? I was losing a LOT of eyebrow/eyelash/body hair about a year ago when my shedding was the worst, but now it's just the hair on my scalp that's continuing to shed. Did you stop using minoxidil? 

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On 2/14/2018 at 9:43 AM, [email protected] said:

definitely guys my hair loss has decreased with the aloe vera shampoo, maybe my telogen effluvium is completing although I do not see babys hairs

 

I'm sure you have hair growth otherwise you would be bald. they're really hard to spot. Also thanks for the good news. 

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Hi guys. I'm new here. Have been following this thread for a few days now in hopes of finding anything positive related to this depressing hair loss due to Accutane. So I took 20 and 10 mg of Accutane lasr year from september till about mid december. My acne cleared up pretty well and I just decided to stop taking it thereafter. Also, I felt like my hair seemed thinner. No hair loss as such while on it but just suddenly felt a bit limp and thin. Anyway all was fine for the rest of December and then suddenly in the first week of Jan my hair started to fall out like crazy and that has been going on until now. I've been supplementing with iron, biotin, zinc and B12. The texture of my hair has changed totally. It's just so dry and matted and its so difficult for me to style it as I end up just seeing more hair fall out. I end up just tying it up in a bun literally everyday since it started falling. I'v forgotten what it feels like to have my hair down and that's literally how I always had it before this horrid hair loss. There have been days when I felt like maybe things will get better and then suddenly it's back to square one. I also fell sick for the past week and I'v noticed even more hair loss which I guess was aggravated by a very high temperature as well. I'm just praying that this hairfall stops. After that it's gonna be a process to get it back to what it was anyway. 
Have any of you undergone PRP hair treatment? I've done 2 sessions but so far no decrease in the amount of hair loss.  Just don't know what to do anymore. It's just taking a toll on my mood and it's literally all I think about  :(

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I did 8 prp sessions and I'm really sorry to say that it made no difference for me it was bloody painfull too .
maybe you might get different results from me but I wouldn't have thought so.
i did this about three years ago 
regards Brendan 

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Hey Brendan. Thanks for replying.  Did you get prp sessions to combat Accutane induced hair loss or as a preventive measure to retain whatever hair you have? I had a bout telogen effluvium in 2016 and 2 months into it, I consulted my dermatologist and got prp treatments done. I felt it helped me during that time. Slowly but surely. I would say after the 3rd session I noticed some improvement. I'm just so mad at myself for taking Accutane. This time round I have nobody else to blame.  It's just so so frustrating.

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@MeritNorth nope, i'm still using minoxidil!  :) In August, when I started using it, my hair was SO bad. The side areas were completely bald. Now, my hair still sheds WAY TOO MUCH and it's very thin, but I don't look visibly balding. Do you think the rogaine is helping you a fair bit too?

I feel like i might have to use it for life - COULDNT psychologically cope with coming off it and facing massive, massive hair fall. It's a shame it's so expensive! I also use way  more than the recommended amount - I spray the foam directly on my scalp and probably cover 50% of my scalp. Not a miracle cure (I still only have about 35-40% of my original hair) but i feel like it's somehow maintaining my hair.

@flowerpower123 - you're right, I should get a scalp biopsy. However, I'm currently on a placement abroad for university and i think I have to wait until the holidays.. when I can hopefully see my GP in the UK and get a derm referral. So frustrating how this is out of my hands but I've got to just focus on other things.

Also, there aren't even many treatment options if this is autoimmune/inflammatory (which i suspect it is). We could be given oral steroids, but those can have serious, serious side effects. Topical steroids can thin the skin in the long run. Steroid injections are apparently very painful and not that effective.

My hormones and vitamins are officially normal - i had them tested recently. This leaves me thinking that his is either 1. a physical change to the hair follicle e.g. accutane has permanently deformed them, OR 2. the autoimmune option: diffuse alopecia areata. Neither of which can be treated that effectively or safely. :/




  Edited by chicanery

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Hello Chinkz! welcome to the group. I never tried any PRP.

Chicanery please be careful with minoxidil, this can affect the heart, it is a vasodilator :) I have stopped using it, i don't like the side effect on me :(

 

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I did the prp about a year after accutane to try and stop the hair loss my gp.s and dermatologist wasn't much help to be honest and prp isn't available on the health service in the uk so I did the prp privately.

The only treatment my dermatologist offered me was a steroid cream called betamethasone which stops inflammation of the scalp and follicles I only tried the betamethasone for a week and chickened out as hair loss is a listed side effect 

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45 minutes ago, brendan452 said:

I did the prp about a year after accutane to try and stop the hair loss my gp.s and dermatologist wasn't much help to be honest and prp isn't available on the health service in the uk so I did the prp privately.

The only treatment my dermatologist offered me was a steroid cream called betamethasone which stops inflammation of the scalp and follicles I only tried the betamethasone for a week and chickened out as hair loss is a listed side effect 

ah interesting, so your dermatologist thought it was an inflammation issue? did you get an official diagnosis name, like diffuse alopecia areata? or did your derm admit that nobody really knows what accutane hair loss is?
6 hours ago, [email protected] said:

Hello Chinkz! welcome to the group. I never tried any PRP.

Chicanery please be careful with minoxidil, this can affect the heart, it is a vasodilator :) I have stopped using it, i don't like the side effect on me :(

 

you're so right - i don't know how safe it is, especially long-term use :smileys_n_people_38::smileys_n_people_38:. I think i'm just going to risk it, though!! I don't think anyone has had a heart attack/serious issues from it. I do heavy cardio exercise alright, so i'm assuming my heart is currently okay.

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Yeah in my opinion I felt let down by the NHS and felt as though they were just fobbing me off and didn't want to look into my case any further.
im going to call and make an appointment with a private dermatologist this week and go private I know it's going to be expensive but if they can resolve this it'll be worth every penny.
hopefully they will do a more thorough job to help me.

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3 hours ago, brendan452 said:

Yeah in my opinion I felt let down by the NHS and felt as though they were just fobbing me off and didn't want to look into my case any further.
im going to call and make an appointment with a private dermatologist this week and go private I know it's going to be expensive but if they can resolve this it'll be worth every penny.
hopefully they will do a more thorough job to help me.

How is you hair situation? how long off accutane?
 

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Nearly 3 years of accutane but before accutane I also took vitamin b5 which also caused me hair shedding.my hair is vey fine and thin by thin I mean miniaturised hair follicles.my hair used to be at least three times more denser.its still shedding and get re growth so I'm not bald it's just a lot finer than it used to be and it's not improved at all I also get a itchy scalp sometimes 

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19 hours ago, brendan452 said:

Nearly 3 years of accutane but before accutane I also took vitamin b5 which also caused me hair shedding.my hair is vey fine and thin by thin I mean miniaturised hair follicles.my hair used to be at least three times more denser.its still shedding and get re growth so I'm not bald it's just a lot finer than it used to be and it's not improved at all I also get a itchy scalp sometimes 

Oh man! 3 years???? I've been off for 7 months now even though I lost a portion of my hair(due to shedding), I still have regrowth and they seem thick enough(some are very small and thin) but I'm happy with what I have left with and it looks like its maintaining itself, however it would suck if it continues to get worst in the next 3 years :( 
have you guys try hair thickening shampoos? maybe that gives some volume back to your hair and make it look thick?!?

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