I have frontal fibrosing alapecia at the moment can anybody help with tips on how to deal with it

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I've been prescribed steroid medication and scalp solution does anybody else have this and how do you c ope with the thoughts that this might. Not work

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8 Replies

  • Posted

    Hi Kath,

    I have been diagnosed as having this complaint well over a year ago but was told it was conected to another complaint Lichen Planus for which they gave me dermovate cream (to use down below!) I was never told to put it on my scalp. I would do though if it works for you - please keep in touch.

    I found the whole thing about losing my hair very distressing but it does not seem to have got any worse and I have now had long hair chopped off and a different hairstyle with a fringe to cover it, which mostly works unless I am out in the windy weather etc.

    What is the name of the scalp solution? I may try it.

    Good luck! Let me know how you get on.

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    • Posted

      Hello Louise,

      Thank you for replying, the treatment for my scalp is also called dermavate it comes in different forms and mine is just called dermavate solution it is a clear liquid whereas yours is a cream, I have only had it for three months so its early days for me, I also take a steroid medication called hydroxychloraquine,

      My symptoms are different to yours because my fringe has almost gone and my hairline has receded quite a lot so its difficult to conceal,however time will tell I have to go back to see the consultant.in six months and just hope its getting under control, my diagnosis was just frontal fibrosing alapecia and its an auto immune disease, im glad yours seems to be okay now.

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  • Posted

    Thanks for reply Kath, I may ask my doctor for the liquid version to put on my scalp as the cream is too greasy. I assume you know that hydroxychloroquine is an anti-malarial drug? Its pretty toxic stuff with lots of side effects (loss of vision probably the most serious!) I'm afraid I couldn't bear taking it for too long so stopped. Perhaps it was the wrong thing to do......................

    I hope all goes well for you. Stay in touch if you want someone to talk to.

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  • Posted

    Hydroxychloroquine isn't a steroid.

    Its an immunomodulatory drug, that also happens to be an old antimalarial.

    Its main use is in treating Lupus and Rheumatoid.

    How are you getting on with it Kath?

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    • Posted

      Hi Ben, thank you for the information you've sent to me I always thought hydroxychloroquine was a steroid because I think the scalp solution I've been prescribed at the same time is a steroid to be honest I don't know very.much about my diagnosis just that the type of alopecia I have is an auto immune disorder and I don't know what causes it, anyway I couldn't tolerate the full dosage of hydroxychloroquine so only take one a day instead of two but I don't think its doing any good because I'm still losing my hair so it hasn't got it under control

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