Hair loss from acitretin

Posted , 7 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I was prescribed acitretin for lichen planaus and it made it considerably worse.  Took it for two months.  I stopped taking it but my hair continues to fall out.  I've list over half of my hair.  Does anyone know how to reverse the side effects or if the hair loss is permanent? This drug is a vitamin a derivative.  Be very careful if you take it... bad side effects! 

0 likes, 13 replies

Report

13 Replies

  • Posted

    So sorry to hear about your hair loss - hair is so much a part of who we are and, unless you have experienced hair loss, you cannot understand how depressing it can be.  I know cancer patients lose their hair but at least it regrows in time.  I refused to take acitretin because of the side effects.  Luckily my dermatologist printed off all the details about this drug for me to read before deciding whether or not to take it.  I saw no reason to take it as the side effects are often dreadful and, once you stop taking it, the symptoms will most likely return. I went to see a trichologist about my hair loss/thinning and she explained quite clearly what happens to the scalp when LS or LP is involved.  The follicles around the hair root become scarred and shrink.  The hair shaft is therefore much shorter before it emerges on the scalp and its life is much shorter.  In my case, I have some hairs which grow to about 5" before falling out and some which only grow to about 2".  Also because the hair never grows long enough to cut, the ends are pointed rather than blunted by scissors.  This also gives the effect of being much finer.  She could offer to hope of my hair ever returning to normal.  She did suggest a hair light/laser therapy which can sometimes encourage growth.  Otherwise she suggested using Viviscal products.  I already take Viviscal tablets and use their hair thickener.  I think both products have helped a little but not enough to use for ever more.  The hair thickener is very pleasant to use, smells lovely and fresh and makes styling my very fine hair much easier.  I have not yet used the light therapy as I'm struggling on trying not to dwell on it at the moment!  Maybe I'll give it a go at some time.  I am so sorry to sound negative but would recommend you visit a trichologist if you want to have a useful conversation about your problem.  I wish you the very best of luck.  If you find the magic formula, please let me know!

     

    Report
    • Posted

      Kathryn-

      Thanks so much for your reply.  And I have been surprised at how devastating hair loss can be.  I am a strong woman but I cry often when I get out of the shower with wet hair and see how much I've lost.  I wish my derm would have printed the side effects!  I will try a trichologist.  Thanks for the recommendation!  

      Report
  • Posted

    The MayoClinic.org site has very in depth information on this drug and it sounds like a frightening medication! The article does indicate that hair loss "is usually reversible". 

    Report
    • Posted

      It's is a frightening drug and no one should take it for LP.   I wish my derm would have told me if the side effects.  But I've learned my lesson now! 

      Report
  • Posted

    Hi Eulala,

    I also took Acitretin for 2 months and started to lose my hair. I stopped taking it as already had LP rash everywhere and losing my hair as well was the last straw.

    I took some chewable hair supplements from Holland & Barrett for couple of months. Not sure if they worked but they tasted nice, my hairdresser told me that lots of medicines cause hair loss but that hair normally returns to normal after around six months. He was right, once I stopped using Acitretin my hair loss gradually stopped and after 6 months it has returned to normal. 

    In the recovery period try to cut down on bleaching & processing of hair as much as possible. I used gentle shampoo & conditioner every other day, again on advise of my hairdresser.

    I have been using some other medication for Lichen Planus rash, which has kept it at bay since September. Will post again to let you now name of this ( not at home at moment) it was prescribed by a Consultant Dermatologist, and did not have any nasty side effects. I took it for 2 months, stopped at end of September and have only had a couple of itchy spots since, which I treat with Dermovate. Hope 18 month nightmare has ended for me, and that it will for you too eventually.

    Angela.

     

    Report
    • Posted

      Angie-

      Thanks so much for replying.  I have been off of the drug for 3 months and my hair keeps falling out at a significant rate.   I can't detect any slowing so it has begun to be visibly noticeable and emotionally troubling.   Did your hair fallout for 6 months or did it begin to stop falling out sooner?  I know everyone is different but I'm just trying to determine if I should get s wig soon.  I have a very public job which has me speaking to hundreds of people a month.  I'm  at a loss as to what to do.  It's much harder to lose my hair than I ever dreamed it would be.  I was never told of these side effects!!!   Thanks again for taking the time to respond!! I really appreciate it. 

      Report
  • Posted

    I stopped taking Acitretin as soon as I noticed hair in shower, and when blow drying brush got clogged with hair. I am sure that your hair will recover in time,it is a recognised side effect of the drug.

    I have fine hair anyway, so am paranoid about losing any of it. If it is making you really unhappy I would try anything that makes you feel less stressed, that, will make matters worse. If a wig would give you confidence while your hair gets back to normal, I would go for it. I am sure in a few months you will see a difference.

    Report
  • Posted

    I was prescribed Methotrexate for my OLP. The drug worked just fine, but my hair fell out by the handfuls and I had rapid weight gain. After two months of that I just decided to quit the drug and gradually my hair grew back. I know what your going through. Sometimes the cure is worse than the disease. After the ordeal with Methotrexate my dermatologist tried me on Plaquenil and it worked great but the side effects of this drug are really bad as well. It can affect your macula and you can have difficulty seeing so after two months I went off of that drug too! Currently my OLP has calmed down and I'm dealing with it by watching my diet.

    Good luck. smile

    Report
  • Posted

    Hi Eulala

    Following on from yesterday, I was prescribed 3 months of Metronidazole, a type of Antibiotic. The consultant I saw had recently been to a conference in the USA where this treatment had been discussed as an alternative to the usual drugs prescribed for severe cases of LP. I was happy to try it as a bit of a guinea pig as it did not have the sort of side effects associated with the other drugs. Happily it does seem to have worked for me, I am almost afraid to write this in case I am tempting fate, I get an occasional itchy spot on the leg it first started on which I immediately treat with  Dermovate ointment and so far it has not spread again.

    Hope you feel better soon, support from this forum does help when you are feeling so low.

    Report
  • Posted

    Just a quick addition to my previous message - I forgot the most important thing!  My consultant said that acetretin caused bone thinning and he would have to prescribe additional medication to prevent this.  I hope your consultant advised/protected you accordingly.
    Report
  • Posted

    I'm also curious to know of other people's experiences. I was on Acitretin for about 7 months and, whilst I enjoyed being 99% free of psoriasis during this time, I couldn't cope with the side effects anymore. In fact, it was the hair loss which made me stop taking the drug. At first, the hair loss was a bit more than normal, but then it got to the point where I dreaded washing my hair and seeing how much would fall away in the shower! It was awful! And what I never contemplated was how losing my hair would affect my self-esteem and make me feel "unhealthy". So I told my doctor I wanted to stop taking the medication, and she slowly phased me off over a few months.

    Once I dropped to 10mg a day, I noticed that my hair loss was becoming more normal. It has been nearly 3 weeks since I stopped taking Acitretin and I would say that my hair loss is maybe a bit more than normal, but nowhere near as bad as when I was taking 25mg a day. I hope to see more improvement in the next few months!

    Whilst the Acitretin was great for clearing up my psoriasis, in hindsight, I wish I had never started on the medication.

    Report
    • Posted

      I'm glad it helped your psoriasis.  I had Lichen Planeus and it made it considerable worse.  My hair started falling out about 1 1/2 months into taking the drug.  I stopped taking it and my hair continues to fall out.  ( 3 months now) So much has fallen out that I actually have small bald spots.  I can only comb over so much so my next step is a wig.  I hate this drug.   But I'm glad it works for some.  I just wish they would have told me that 40% of the women on this drug experience some degree of hair loss.   (that was said my my pharmacist). 

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up