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awills

Losing so much hair after roaccutane UPDATED! MY RECOVERY.

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(UPDATE IS AT THE END OF THIS POST, UNDERNEATH THE PHOTO)

Hi everyone. This is going to be long! I tried to bold important stuff, skip to the end if you wish.

I started isotretinoin (roaccutane/accutane) in Feb and finished my course 12th July. I'm female and usually around 58kg. I was on 20mg daily for the first week, then 40mg daily until month 3, 50mg daily until month 4 and then back to 40mg daily for the remainder. My side effects during my course were minimal, slightly dry lips and red eyes which were easily taken care of. I had a sudden hit of severe side effects towards the end of my course - pain in my spine, skull, severe nausea and loose bowel movements which remained for 10 days. It was after that we decided to go back down to 40mg, but if the side effects I had suddenly experienced came back I was to come off early. (I only had 4 weeks left and had already completed 5 months.) I stopped 2 weeks early due to the hair loss, none of the other side effects returned. Please note that I am in the UK and the dermatology service discharged me from their care after they gave me my last prescription, and they will not even talk to me on the phone now that I am not under their care. Therefore I am unable to get any advice from them regarding my problem. 

Before I ever used roacctuane I had very thick, straight hair, although it has always for some reason been thinner at the temple area. My daily hair fall-out was zero - and by that I mean, there was so little that I never ever noticed it or even thought about it. Even when I showered I'd say that under 10 hairs came out that I saw, and I only washed my hair once a week. I had REALLY great hair, my hairdresser was always in awe of the condition of it. By the way, my hair is completely natural I don't colour it or process it at all.

In mid May, around 3 months in to my course, I noticed that my hair started shedding. I started counting hairs and it was usually around 50 hairs a day. I know that is average daily fall-out but obviously everybody is different and for me, that was a lot of hair. It didn't bother me though because I knew that it was considered 'normal' loss and I also knew that hair loss was an expected side effect. 

I don't remember exactly when the shedding started becoming scary, but if I had to guess I'd say beginning of June. It is now mid August and for the last few weeks I have been shedding at least 500 hairs a day, and it is only getting worse. Today alone I have lost around 800 hairs, sometimes I stop counting to save myself the stress but I like to keep informed so I can track progress... assuming there will eventually be some progress. Yesterday it was around 600 hairs. I have had visible regrowth almost the entire time, hairs which are a few inches long, but these new hairs are coming out now too. The dryness of my scalp subsided almost immediately after discontinuing roaccutane, but although all the dry flakiness had gone it remained a bit red and irritated so I started using Aveda Beautifying Oil and Aveda Scalp Benefits shampoo and conditioner. I use the oil on my scalp overnight before wash day. I must say that the condition of my scalp has improved a lot. I won't know wether the redness and irritation has gone completely until I see my lady again in a few weeks time, she does a full check for me and uses a special camera which photographs the scalp wayyyy up close. My scalp feels tender all the time, and for the last week or so it has become itchy for the first time. This may be due to the excessive loss, I'm not really sure.

When my hair loss became extreme I started researching when it would end, what I could do about it, etc. I looked in to different types of vitamins and supplements and initially decided against them as I read that certain things (vit B12, biotin) can actually cause acne and obviously, I don't want acne to return after enduring all of this. Around 8 days ago though I had a complete break down, crying down the phone to my mum like a baby in disbelief at the amount of hair that had just come off of my head in the shower. I had to do something to help myself, I couldn't continue throwing all of my hair in the bin and doing nothing to try and help the situation. So I purchased Philip Kingsley Tricho Complex supplements, the ingredients of which I will list below. I've been taking them for 7 days now. I don't expect these to help with the hair loss, but I do hope that it will keep any new growth in top condition. The packet says to allow 3 months to notice the benefits. 

Philip Kingsley Tricho Complex Ingredients per tablet (two taken daily for 4 months, then one daily to maintain optimum levels)
Biotin - 500 ug -  1000% RDA
Iron -  14mg - 100% RDA
L-Lysine - 97.5mg 
L-Methionine  - 1mg
Copper - 1mg - 100% RDA
Zinc - 1mg - 100% RDA
Selenium - 110ug - 200% RDA
Vitamin C - 80mg - 100% RDA
Vitamin B12 - 6ug - 240% RDA
Vitamin D3 - 10ug - 50% RDA
Pantothenic Acid - 3mg - 50% RDA

I just would really, really love to find someone who has been through this and is now on the other side. I feel certain that I am going to lose all of my hair. I read that if you lose 500 hairs a day you'll be bald in 200 days... well I've been losing more than that daily. I'm really scared and I need to hear some positivity. I'm having a really hard time dealing with the hair loss. My parting looks so thin. 

Has anybody experienced this?
How long did the shedding last?
Did your hair return to normal?

And for those of you wondering, yes my skin is completely clear now. The flat red marks left behind are slowly fading. At the moment I can't say I regret taking this medication because my acne was severe and painful, gave me social anxiety and gave me incredibly low self esteem, for 4 years. However, if I lose much more hair I'm afraid I will live to regret my decision. 

Photo of ONE DAYS hair loss (today)
IMG_3618.JPG




*******************UPDATE*******************

JANUARY 22ND 2017 - MY RECOVERY! - RECOMMENDATIONS... 

First off, those supplements that I wrote about above, I took them for all of two weeks before I had to stop. Accutane has done something to my stomach, and I threw up every single time I took those tablets, literally I would be in the bathroom for half an hour, despite the fact that I hadn’t vomitted for almost ten years before that. So yeah, my recovery has nothing to do with supplements. Oh and those two weeks of supplements gave me an inflamed patch of acne on my cheek, which cleared up within 3/4 weeks of discontinuing the supplements. My skin is still clear! 

I have always seen my hairdresser every 10 weeks for trims. Avoiding your hairdresser will not make your hair grow back, and it will not prevent it from falling out. You really need to look after the hair that is actually left on your head! 

If your scalp is still dry from accutane, I really recommend the products that I mentioned in my original post above. I used those until the bottles ran out and now my scalp is at a place where I do not need special products. Remember that your scalp needs to be in good condition in order to grow the healthiest hair possible. 

I had my iron and thyroid levels checked at the peak of my hair loss. Those levels were within normal range. It is crucial that you get these levels checked, if they are not within normal range they could be the cause of your hair loss and your hair loss will not improve without appropriate treatment! 

Finally, I had to stop stressing about the hair loss. I stopped counting the hairs that were coming out, and I stopped researching on the internet. 

Now.. 8 months after my hair loss began, I can wash my hair once or twice a week and only 30-40 hairs come out. Finally, my hair has returned to normal! I have hundreds of new hairs all over my scalp, ranging from a few centimetres, to 6/7 inches long. They are the bane of my life right now because they look bloody terrible, but I am so grateful because I genuinely never thought my hair would come back!

Guys, it was really tough. It has been an extremely tough 8 months. I cried every day for weeks, I called my mother crying every time I got out the shower. I looked at the hair that I had lost and I just couldn’t believe this was actually happening to me. Please hang in there, it gets better. 

I hope that my update has helped somebody. I couldn’t find one positive post on the whole of the world wide web when I was going through this, so at least this one now exists, and I hope that anybody searching for answers finds some comfort in my story.

Edited by awills
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Hey girl,

Ugh, I can completely relate to your story. I quit accutane at three months because of the hair shedding. My derm told me it was all temporary but it just didn't feel right losing all of that hair. I quit accutane 5 months ago and to this day I am losing more than my "normal"...

I have seen 4 different deems. They all have different opinions about accutane and hair loss, someone said it is out of your system immediately, someone said 2 years to be out of your system, someone said they have never seen hair loss, someone said it can cause various forms of alopecia...so frustrating!

I have had a scalp biopsy done. I am taking various supplements, etc. to help. Viviscal is one of them. I am to a point now where I don't know if I will be wearing a wig by Christmas time.

Where is my beautiful hair?!

Sorry to vent, although I am sure you understand. This is the worst.

What I will say is that I have seen fluctuation with shedding. For example, my last huge shed was the first week of August (400 hairs or so a day), and now the shedding has begun to slow down. This has happened before though in these last 5 months since quitting, slowing down, speeding up, slowing down, speeding up...very frustrating. 

Today my mom took me to see a specialist who is going to run a ton of blood work, cheek swab, etc. to see where my levels are at for practically everything. I really want to get to the bottom of this.

And although things have only gotten worse, I have hope that things will get better. Definitely not getting my hopes too high, though. After seeing this much loss, I have had to think about the next steps I may need to take if this doesn't improve soon. 

Edited by lovemydogs
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2 hours ago, lovemydogs said:

Hey girl,

Ugh, I can completely relate to your story. I quit accutane at three months because of the hair shedding. My derm told me it was all temporary but it just didn't feel right losing all of that hair. I quit accutane 5 months ago and to this day I am losing more than my "normal"...

I have seen 4 different deems. They all have different opinions about accutane and hair loss, someone said it is out of your system immediately, someone said 2 years to be out of your system, someone said they have never seen hair loss, someone said it can cause various forms of alopecia...so frustrating!

I have had a scalp biopsy done. I am taking various supplements, etc. to help. Viviscal is one of them. I am to a point now where I don't know if I will be wearing a wig by Christmas time.

Where is my beautiful hair?!

Sorry to vent, although I am sure you understand. This is the worst.

What I will say is that I have seen fluctuation with shedding. For example, my last huge shed was the first week of August (400 hairs or so a day), and now the shedding has begun to slow down. This has happened before though in these last 5 months since quitting, slowing down, speeding up, slowing down, speeding up...very frustrating. 

Today my mom took me to see a specialist who is going to run a ton of blood work, cheek swab, etc. to see where my levels are at for practically everything. I really want to get to the bottom of this.

And although things have only gotten worse, I have hope that things will get better. Definitely not getting my hopes too high, though. After seeing this much loss, I have had to think about the next steps I may need to take if this doesn't improve soon. 


Thank you so much for replying to my post! It is so relieving to hear that I'm not the only one suffering this bad; I have scoured the internet daily for weeks and was yet to come across anyone who was losing as many hairs daily as I am. How many are you losing per day now? Mine hasn't had a break at all yet, so far it has just been gradually getting worse.

I haven't counted for the last few days because I feel like it's making me ill. Since my original post I noticed that my hair loss is visible now, I have gaps at the crown and my parting is extremely thin. Like you, I'm starting to realise the seriousness of this condition. 

Has the oiliness of your scalp returned since quitting accutane? What were the results of the scalp biopsy?
 
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Hey there! The oiliness of my scalp has returned in the last month or so. I went from hardly being able to shampoo my hair once a week to needing to shampoo my hair every day. 

I will say that my shedding is currently on the low end, still more than normal though. It goes up and down. That is why I am trying not to get my hopes up too high right now...it could speed up again, though I hope this is it and this nightmare is ending, haha. 

My scalp biopsy showed a resolved effluvium. My telogen to anagen ration was normal (10:1). It did show some "slight follicular miniaturization". I was worried that this may mean the beginning of genetic hair loss, but they said that sometimes when your scalp is shocked from Telogen Effluvium some of your hair follicles can become temporarily miniaturized. 

It's funny, every DR i have seen says they are pretty sure I will make a full recovery, yet the density of hair on my head just continues to decrease...

Are you also on birth control?

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14 hours ago, lovemydogs said:

Hey there! The oiliness of my scalp has returned in the last month or so. I went from hardly being able to shampoo my hair once a week to needing to shampoo my hair every day. 

I will say that my shedding is currently on the low end, still more than normal though. It goes up and down. That is why I am trying not to get my hopes up too high right now...it could speed up again, though I hope this is it and this nightmare is ending, haha. 

My scalp biopsy showed a resolved effluvium. My telogen to anagen ration was normal (10:1). It did show some "slight follicular miniaturization". I was worried that this may mean the beginning of genetic hair loss, but they said that sometimes when your scalp is shocked from Telogen Effluvium some of your hair follicles can become temporarily miniaturized. 

It's funny, every DR i have seen says they are pretty sure I will make a full recovery, yet the density of hair on my head just continues to decrease...

Are you also on birth control?


I'll be keeping my fingers crossed for you! That sounds like a really good result from the biopsy you must have been really relieved! It's also good to hear that the miniaturization is temporary, I noticed some of the new hairs that are falling out from my scalp are very fine and that was a bit of a worry but what your doc said makes me feel better. I'm sure once the fall-out stops your hair density will return to normal, even if it does take a while! I noticed on another post that you're 23 (I just turned 24) so I think we definitely have age on our side. 

I have an IUD (mirena.) My gynaecologist says the hormones from the IUD don't enter the bloodstream so shouldn't effect me in any way, and so far it hasn't that I'm aware of. I had it fitted almost 2 years ago. I was using Yasmin before that, and when I went on Yasmin I noticed that my hair and nails became thinner and prone to breaking, my nails would peel constantly. When I came off it they returned to normal within 6 months to a year and they have remained in top condition ever since, even after having the IUD fitted (until accutane took over of course!) 

How are you styling your hair since the shedding started? Have you had a haircut since? I'm booked in tomorrow morning for a trim, I usually go every 10 weeks but I put my last appointment off because I was too scared to let anybody touch my hair! I'm a bit worried about clogging up their drain when they wash it! 
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I finished my second round of accutane and near the end of both treatments, I started losing way more hair than normal. But following my initial treatment, I did see hair growing back after several months. But then I got into a car accident and got my wisdom teeth out and one of my body's reactions to stress is hairloss so I never really found out if my hair returned to normal. Following this round of accutane, I am using Rocky Mountain Oils Hair Support to at least strengthen and nourish the hair follicles for when the hair grows back in. Im also using Cedarwood oil on my face because it "protects skin pores from letting in dust or any harmful microbes into the body, which lead to acne and skin infections. Cedarwood oil is also effective for tightening the facial skin and giving it a youthful appearance."

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14 hours ago, awills said:

I'll be keeping my fingers crossed for you! That sounds like a really good result from the biopsy you must have been really relieved! It's also good to hear that the miniaturization is temporary, I noticed some of the new hairs that are falling out from my scalp are very fine and that was a bit of a worry but what your doc said makes me feel better. I'm sure once the fall-out stops your hair density will return to normal, even if it does take a while! I noticed on another post that you're 23 (I just turned 24) so I think we definitely have age on our side. 

I have an IUD (mirena.) My gynaecologist says the hormones from the IUD don't enter the bloodstream so shouldn't effect me in any way, and so far it hasn't that I'm aware of. I had it fitted almost 2 years ago. I was using Yasmin before that, and when I went on Yasmin I noticed that my hair and nails became thinner and prone to breaking, my nails would peel constantly. When I came off it they returned to normal within 6 months to a year and they have remained in top condition ever since, even after having the IUD fitted (until accutane took over of course!) 

How are you styling your hair since the shedding started? Have you had a haircut since? I'm booked in tomorrow morning for a trim, I usually go every 10 weeks but I put my last appointment off because I was too scared to let anybody touch my hair! I'm a bit worried about clogging up their drain when they wash it! 

We will see! I am nervous about the shedding speeding up again and will update you on here if it does.

I am taking Ortho Tri Cyclen. I took it before in high school and didn't have any issues with it. I started it again when I started Accutane for the birth defect reasons. All of my Drs are pretty confident the accutane has caused my hair thinning, but I fear that the birth control could of played a role. I guess I have just had a lot of time to worry and think about all the reasons why I could lose my hair. :(

And I actually shaved my head in April. I am a graduate student and the massive hair loss was distracting me from finals, so my husband just shaved my head for me one night so I could focus on my studies. I have to get a 4.0 in this Master's program in order to get into a good PhD program. Sounds drastic but I take my studies very seriously, haha.

My hair has grown out now to a longish pixie length, but the thinning has become too noticeable for me to feel comfortable going to get it trimmed. :(

And thanks for the finger crossing-same to you!
7 hours ago, liveloveliftmorr said:

I finished my second round of accutane and near the end of both treatments, I started losing way more hair than normal. But following my initial treatment, I did see hair growing back after several months. But then I got into a car accident and got my wisdom teeth out and one of my body's reactions to stress is hairloss so I never really found out if my hair returned to normal. Following this round of accutane, I am using Rocky Mountain Oils Hair Support to at least strengthen and nourish the hair follicles for when the hair grows back in. Im also using Cedarwood oil on my face because it "protects skin pores from letting in dust or any harmful microbes into the body, which lead to acne and skin infections. Cedarwood oil is also effective for tightening the facial skin and giving it a youthful appearance."


Hey there!

Thanks for the info. How long did it take after you stopped accutane for your hair to stop falling out/regrow?
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On 23 August 2016 at 0:46 AM, lovemydogs said:

We will see! I am nervous about the shedding speeding up again and will update you on here if it does.

I am taking Ortho Tri Cyclen. I took it before in high school and didn't have any issues with it. I started it again when I started Accutane for the birth defect reasons. All of my Drs are pretty confident the accutane has caused my hair thinning, but I fear that the birth control could of played a role. I guess I have just had a lot of time to worry and think about all the reasons why I could lose my hair. :(

And I actually shaved my head in April. I am a graduate student and the massive hair loss was distracting me from finals, so my husband just shaved my head for me one night so I could focus on my studies. I have to get a 4.0 in this Master's program in order to get into a good PhD program. Sounds drastic but I take my studies very seriously, haha.

My hair has grown out now to a longish pixie length, but the thinning has become too noticeable for me to feel comfortable going to get it trimmed. :(

And thanks for the finger crossing-same to you!


Thanks for keeping me updated, I really appreciate it! My experience with hair thinning on birth control was very different to what I'm experiencing now, I didn't realise the density of my hair had decreased until one day I was like wow my hair used to be way thicker than this. I still didn't realise it was down to my birth control until I saw how much hair grew back when I came off it! Then I did a little research on it and realised that was the cause of my peeling nails too. 

I can only imagine how stressful you were finding the hair loss while you were studying. Hopefully your hair isn't worrying you as much now that it has slowed down a bit. My trim wasn't so bad, the day after (yesterday) I had the lowest shed that I've had for weeks/months. I didn't count (I am trying my very hardest not to do that any more!) but I could tell by looking that it wasn't as much as usual. My hairdresser made me feel a lot better actually! So I'm glad I went after putting it off for so long.

Will come back to update when/if theres any change!
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hey there! just an update. The last couple of days my shedding has increased again. Hoping for recovery soon. Hoping this is just the roller coaster of TE and that the high shed days will become fewer and far between. 

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Hey! I am sure that isotretinoin continues to work for months after you stop. However, after this period the side effects should stop. I hope that is the case for you! 

Lovemydogs, I was supposed to start my PhD this month! I just finished my masters degree and I had to postpone it a year as I am too anxious and worried about things. (I am 3 months into my course.)

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I would look into the hairloss thread, there are a lot men who posted, but woman also. some have suffered from continual hair loss, where it grows and then sheds again, some have recovered. I personally have gone through stages over the last 8yrs. Pm if you have any questions.

Good Luck

Jen

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Yea I am losing massive amounts of hair still. My part is widening, diffuse hair loss all over my head. Super upsetting. Worried it could be the birth control I'm on...(ortho tri cyclen). Although I am worried quitting the birth control could make the hair loss worse. 

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Sorry to hear it still hasn't resolved. Mine I'm still shedding massively but not visibly noticeable to anybody yet. I've had so much other stuff going on lately which is stressing me that I haven't been paying attention to my hair, which is probably a good thing because I was worrying about it far too much. 

Unfortunately my acne has returned despite finishing 5 and a half months and having beautifully clear and smooth skin since week 8. I don't know what to do next, I tried everything before roaccutane because I was so reluctant to go on such a heavy drug. I read that if you need a second course it's better to start as soon as possible but with the hair shedding I just can't bring myself to make that appointment. Don't suppose you have tried anything since that has worked for you?! Has the birth control helped with your skin at all? 

I hope your doctor can give you some good advice in regard to quitting the birth control. 

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On 9/7/2016 at 2:56 AM, ShyINFJ said:

Hey! I am sure that isotretinoin continues to work for months after you stop. However, after this period the side effects should stop. I hope that is the case for you! 

Lovemydogs, I was supposed to start my PhD this month! I just finished my masters degree and I had to postpone it a year as I am too anxious and worried about things. (I am 3 months into my course.)

If you continue to take accutane you may never get your PhD. Brain fog/chemo brain, is widely reported which endures for many years post accutane.
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On September 20, 2016 at 11:01 AM, awills said:

Sorry to hear it still hasn't resolved. Mine I'm still shedding massively but not visibly noticeable to anybody yet. I've had so much other stuff going on lately which is stressing me that I haven't been paying attention to my hair, which is probably a good thing because I was worrying about it far too much. 

Unfortunately my acne has returned despite finishing 5 and a half months and having beautifully clear and smooth skin since week 8. I don't know what to do next, I tried everything before roaccutane because I was so reluctant to go on such a heavy drug. I read that if you need a second course it's better to start as soon as possible but with the hair shedding I just can't bring myself to make that appointment. Don't suppose you have tried anything since that has worked for you?! Has the birth control helped with your skin at all? 

I hope your doctor can give you some good advice in regard to quitting the birth control. 


Hey!

I really feel for you. Every day I worry about my acne coming back and having to go back on accutane. I am now taking birth control, retina a, and aczone. So far so good.

I don't know if the birth control is what is helping keep me clear. It could be! But it could also be what is making my hair fall out. I would just advise you to think carefully before starting any more drugs or Rx. 

Keep me updated. Hoping the best for you,

Also, my hair is still falling out. I quit accutane over 6 months ago. 
On September 6, 2016 at 6:56 PM, ShyINFJ said:

Hey! I am sure that isotretinoin continues to work for months after you stop. However, after this period the side effects should stop. I hope that is the case for you! 

Lovemydogs, I was supposed to start my PhD this month! I just finished my masters degree and I had to postpone it a year as I am too anxious and worried about things. (I am 3 months into my course.)


Hey! Just seeing this! I feel you completely. Good luck with your course. And good luck with your future studies. Unfortunately I am over 6 months post accutane and my hair is still falling out. We can't let this bring us down. Stay strong, we will all get through this.
On September 20, 2016 at 11:01 AM, awills said:

Sorry to hear it still hasn't resolved. Mine I'm still shedding massively but not visibly noticeable to anybody yet. I've had so much other stuff going on lately which is stressing me that I haven't been paying attention to my hair, which is probably a good thing because I was worrying about it far too much. 

Unfortunately my acne has returned despite finishing 5 and a half months and having beautifully clear and smooth skin since week 8. I don't know what to do next, I tried everything before roaccutane because I was so reluctant to go on such a heavy drug. I read that if you need a second course it's better to start as soon as possible but with the hair shedding I just can't bring myself to make that appointment. Don't suppose you have tried anything since that has worked for you?! Has the birth control helped with your skin at all? 

I hope your doctor can give you some good advice in regard to quitting the birth control. 

Oh and also I am seeing a hair specialist on Monday @ UCSF. I will keep you posted as to what I find out. 
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I currently have a month and 2 weeks left of my accutane treatment.

I started shedding badly, like you, about a month ago. While not visible, I feel like I've lost 40-50% of my hair density. 

I am considering stopping treatment, but if the hair loss continues anyway I may as well finish, right? Ugh. How frustrating. By far the worst side effect I've experienced since I was put on the medication... I'm scared to wash my hair, and terrified to put it up or brush it. :/ 
 

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11 hours ago, Ketitbee said:

I currently have a month and 2 weeks left of my accutane treatment.

I started shedding badly, like you, about a month ago. While not visible, I feel like I've lost 40-50% of my hair density. 

I am considering stopping treatment, but if the hair loss continues anyway I may as well finish, right? Ugh. How frustrating. By far the worst side effect I've experienced since I was put on the medication... I'm scared to wash my hair, and terrified to put it up or brush it. :/ 
 


I agree, I continued to the end of my course despite the hair loss. 

My hair was the same, because it was thick to begin with, despite losing over 50% of it, it was still never visible to anybody else. It does upset me sometimes seeing how much thinner my hair is, it just doesn't look as luxurious as it used to :( The hairbands that I've used my entire life are too big to hold my hair now! 

Please don't be scared to wash it, brush it etc. I promise you, those things do not make your hair fall out. All of the hair that comes out when you do those things are hairs that have already entered the telogen phase, which means they have already been 'released.' It would take an extremely hard 'pull' to the hair to force it out before it's ready. 

I hope it doesn't last too long for you! It is really, really tough. 
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5 hours ago, awills said:

I agree, I continued to the end of my course despite the hair loss. 

My hair was the same, because it was thick to begin with, despite losing over 50% of it, it was still never visible to anybody else. It does upset me sometimes seeing how much thinner my hair is, it just doesn't look as luxurious as it used to :( The hairbands that I've used my entire life are too big to hold my hair now! 

Please don't be scared to wash it, brush it etc. I promise you, those things do not make your hair fall out. All of the hair that comes out when you do those things are hairs that have already entered the telogen phase, which means they have already been 'released.' It would take an extremely hard 'pull' to the hair to force it out before it's ready. 

I hope it doesn't last too long for you! It is really, really tough. 
Your post gave me hope that'll reverse/slow down shortly after taking it- I really hope it does. I can cope with thin hair, but if it continues I don't want to be bald within a year haha.
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Happy your hair came back! The reason you don't see anything positive is nwxause 1. Only people who have an issue post online someone isn't gonna be like "I took accutane and didn't lose any hair" for no reason. And 2. When someone's problems goes away or resolves itself, usually the don't update. It was nice to update your post to show people that they need to chill as things will improve cover time. 8 months seems to be about right. Congrats 

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On 14/08/2016 at 10:22 PM, awills said:

(UPDATE IS AT THE END OF THIS POST, UNDERNEATH THE PHOTO)

Hi everyone. This is going to be long! I tried to bold important stuff, skip to the end if you wish.

I started isotretinoin (roaccutane/accutane) in Feb and finished my course 12th July. I'm female and usually around 58kg. I was on 20mg daily for the first week, then 40mg daily until month 3, 50mg daily until month 4 and then back to 40mg daily for the remainder. My side effects during my course were minimal, slightly dry lips and red eyes which were easily taken care of. I had a sudden hit of severe side effects towards the end of my course - pain in my spine, skull, severe nausea and loose bowel movements which remained for 10 days. It was after that we decided to go back down to 40mg, but if the side effects I had suddenly experienced came back I was to come off early. (I only had 4 weeks left and had already completed 5 months.) I stopped 2 weeks early due to the hair loss, none of the other side effects returned. Please note that I am in the UK and the dermatology service discharged me from their care after they gave me my last prescription, and they will not even talk to me on the phone now that I am not under their care. Therefore I am unable to get any advice from them regarding my problem. 

Before I ever used roacctuane I had very thick, straight hair, although it has always for some reason been thinner at the temple area. My daily hair fall-out was zero - and by that I mean, there was so little that I never ever noticed it or even thought about it. Even when I showered I'd say that under 10 hairs came out that I saw, and I only washed my hair once a week. I had REALLY great hair, my hairdresser was always in awe of the condition of it. By the way, my hair is completely natural I don't colour it or process it at all.

In mid May, around 3 months in to my course, I noticed that my hair started shedding. I started counting hairs and it was usually around 50 hairs a day. I know that is average daily fall-out but obviously everybody is different and for me, that was a lot of hair. It didn't bother me though because I knew that it was considered 'normal' loss and I also knew that hair loss was an expected side effect. 

I don't remember exactly when the shedding started becoming scary, but if I had to guess I'd say beginning of June. It is now mid August and for the last few weeks I have been shedding at least 500 hairs a day, and it is only getting worse. Today alone I have lost around 800 hairs, sometimes I stop counting to save myself the stress but I like to keep informed so I can track progress... assuming there will eventually be some progress. Yesterday it was around 600 hairs. I have had visible regrowth almost the entire time, hairs which are a few inches long, but these new hairs are coming out now too. The dryness of my scalp subsided almost immediately after discontinuing roaccutane, but although all the dry flakiness had gone it remained a bit red and irritated so I started using Aveda Beautifying Oil and Aveda Scalp Benefits shampoo and conditioner. I use the oil on my scalp overnight before wash day. I must say that the condition of my scalp has improved a lot. I won't know wether the redness and irritation has gone completely until I see my lady again in a few weeks time, she does a full check for me and uses a special camera which photographs the scalp wayyyy up close. My scalp feels tender all the time, and for the last week or so it has become itchy for the first time. This may be due to the excessive loss, I'm not really sure.

When my hair loss became extreme I started researching when it would end, what I could do about it, etc. I looked in to different types of vitamins and supplements and initially decided against them as I read that certain things (vit B12, biotin) can actually cause acne and obviously, I don't want acne to return after enduring all of this. Around 8 days ago though I had a complete break down, crying down the phone to my mum like a baby in disbelief at the amount of hair that had just come off of my head in the shower. I had to do something to help myself, I couldn't continue throwing all of my hair in the bin and doing nothing to try and help the situation. So I purchased Philip Kingsley Tricho Complex supplements, the ingredients of which I will list below. I've been taking them for 7 days now. I don't expect these to help with the hair loss, but I do hope that it will keep any new growth in top condition. The packet says to allow 3 months to notice the benefits. 

Philip Kingsley Tricho Complex Ingredients per tablet (two taken daily for 4 months, then one daily to maintain optimum levels)
Biotin - 500 ug -  1000% RDA
Iron -  14mg - 100% RDA
L-Lysine - 97.5mg 
L-Methionine  - 1mg
Copper - 1mg - 100% RDA
Zinc - 1mg - 100% RDA
Selenium - 110ug - 200% RDA
Vitamin C - 80mg - 100% RDA
Vitamin B12 - 6ug - 240% RDA
Vitamin D3 - 10ug - 50% RDA
Pantothenic Acid - 3mg - 50% RDA

I just would really, really love to find someone who has been through this and is now on the other side. I feel certain that I am going to lose all of my hair. I read that if you lose 500 hairs a day you'll be bald in 200 days... well I've been losing more than that daily. I'm really scared and I need to hear some positivity. I'm having a really hard time dealing with the hair loss. My parting looks so thin. 

Has anybody experienced this?
How long did the shedding last?
Did your hair return to normal?

And for those of you wondering, yes my skin is completely clear now. The flat red marks left behind are slowly fading. At the moment I can't say I regret taking this medication because my acne was severe and painful, gave me social anxiety and gave me incredibly low self esteem, for 4 years. However, if I lose much more hair I'm afraid I will live to regret my decision. 

Photo of ONE DAYS hair loss (today)
IMG_3618.JPG




*******************UPDATE*******************

JANUARY 22ND 2017 - MY RECOVERY! - RECOMMENDATIONS... 

First off, those supplements that I wrote about above, I took them for all of two weeks before I had to stop. Accutane has done something to my stomach, and I threw up every single time I took those tablets, literally I would be in the bathroom for half an hour, despite the fact that I hadn’t vomitted for almost ten years before that. So yeah, my recovery has nothing to do with supplements. Oh and those two weeks of supplements gave me an inflamed patch of acne on my cheek, which cleared up within 3/4 weeks of discontinuing the supplements. My skin is still clear! 

I have always seen my hairdresser every 10 weeks for trims. Avoiding your hairdresser will not make your hair grow back, and it will not prevent it from falling out. You really need to look after the hair that is actually left on your head! 

If your scalp is still dry from accutane, I really recommend the products that I mentioned in my original post above. I used those until the bottles ran out and now my scalp is at a place where I do not need special products. Remember that your scalp needs to be in good condition in order to grow the healthiest hair possible. 

I had my iron and thyroid levels checked at the peak of my hair loss. Those levels were within normal range. It is crucial that you get these levels checked, if they are not within normal range they could be the cause of your hair loss and your hair loss will not improve without appropriate treatment! 

Finally, I had to stop stressing about the hair loss. I stopped counting the hairs that were coming out, and I stopped researching on the internet. 

Now.. 8 months after my hair loss began, I can wash my hair once or twice a week and only 30-40 hairs come out. Finally, my hair has returned to normal! I have hundreds of new hairs all over my scalp, ranging from a few centimetres, to 6/7 inches long. They are the bane of my life right now because they look bloody terrible, but I am so grateful because I genuinely never thought my hair would come back!

Guys, it was really tough. It has been an extremely tough 8 months. I cried every day for weeks, I called my mother crying every time I got out the shower. I looked at the hair that I had lost and I just couldn’t believe this was actually happening to me. Please hang in there, it gets better. 

I hope that my update has helped somebody. I couldn’t find one positive post on the whole of the world wide web when I was going through this, so at least this one now exists, and I hope that anybody searching for answers finds some comfort in my story.


Hey I'm glad to hear you've experienced alot of improvement! It's almost been a year since I stopped and I've experienced hair loss aswell (though not as bad)

I coulden't understand what treatments actually helped you recover your hair? And how long/often you used those treatments?

If you could help me out I'd be so happy! I'm a 19 year old male if that matters
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Hello. I took accurate for about 5 months on a regular dosage for an 18 year old female with moderate accurate. It has been about 4 months since my last pill and within the past month I have last over 60% percent of my hair. When I shower I find Uber 500 hairs that just continually fall out. Not in chunks but hair shedding and I had over 6 blood tests and I do not have any thyroid problems or vitamin Deficiency, thus leading me to the conclusion that accurate is that cause. Will this stop soon? I still lose the same amount of hair everyday for a month and don’t know what to do. Also, are there any suggestions of shampoos, oils, supplements, etc? Thanks 

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Hi guys I just logged in for the first item in AGES. 

Sorry if my update wasn't clear - there was no product that helped my hair come back, and no product will help your hair come back either. The products I recommended were only to keep your scalp in optimal condition (because mine was very tender, red and dry until it recovered.) The oil was great for moisturising the scalp.

The supplements I tried for two weeks did nothing, I was sick every time I took them and they caused a break out so I stopped taking them. They had nothing to do with the hair recovery. 

My hair shed excessively for about 12 months from when it started and I lost around 50-60% of my hair density - like I said, hairbands wouldn't even stay in my hair that's how thin it was. For the majority of those 12 months I was losing hundreds of hairs - up to 800 hairs a day, until around the 8 month mark it came down to 30-40 hairs day (normal range for humans in general but still way more than was normal for me personally.) It remained at 30-40 hairs daily for some months, then after some more months past, it did come back down to shedding a few a day and it remains that way even now.

My accutane course finished nearly 3 years ago now and my hair is totally normal again. It just takes time. I know how hard it is, guys! 

Also - my hair went very thin around the temples. THIS ALL GREW BACK! It grew back so suddenly that it looked like I had a (very fine) fringe (bangs) cut in - so I had to actually go and get a fringe cut in! 

Hope this answers any questions but please feel free to ask away if there any more! 

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I stopped accutane early because of the hair loss, and it’s only been a month since I stopped. This has literally caused me to become withdrawn from my friends and family; it’s embarrassing and stressful. I have spent countless hours researching a fix online, and have come up empty handed. Your article has probably been the most helpful. I am hoping this won’t last a year or so as it seems to have for you and many. Thanks for writing about your experience, it makes me feel a little better and gives me hope that this may eventually stop on its own. 

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On 7/21/2019 at 3:30 AM, Quelei said:

I stopped accutane early because of the hair loss, and it’s only been a month since I stopped. This has literally caused me to become withdrawn from my friends and family; it’s embarrassing and stressful. I have spent countless hours researching a fix online, and have come up empty handed. Your article has probably been the most helpful. I am hoping this won’t last a year or so as it seems to have for you and many. Thanks for writing about your experience, it makes me feel a little better and gives me hope that this may eventually stop on its own. 

I'm sorry you're going through this, it is very difficult. Please rest assured it will come to an end. I was convinced I'd lose all of my hair but I didn't. The best way you can help yourself right now is try not to focus on the hair loss, and make sure you are not under eating. I believe eating enough calories is very important. Also, if your scalp is dry and tender as mine was, I do thoroughly recommend Aveda beautifying oil as a scalp treatment. I massaged it in at night time and washed it out in the morning. It won't help the hair come back but it will help to keep your scalp in optimal condition. Fingers crossed for a speedy recovery. 

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Hey OP just wanted to thank you for making this thread and keeping up with it. Yours is the only one I could find on a similar topic with detail and everything so youve given me alot of hope. I myself am having a ton of breakage, no shedding, because I believe accutane is drying out my hair to insane degrees and I learned about 2 weeks ago that despite anything I do, nothings going to stop it. I originally planned for the 6 month course but Im going to come off after 4 because I have a life and if my acne comes back oh well, I cant put it on hold for this nonsense. I know you mentioned in your post that you did recover (after seeing your experience I was genuinely VERY happy for you), how long do you think it took your hair to stabalize after coming off? Do you think you made a full recovery, nothing permanent lost? And hows your skin doing today? What dosage were you on (I started 30 mg and was upped to 40 for the remainder of the course). Take care and hope you got that/are working successfully on that PhD.

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