Skip to content
Ad
in this discussion +3 following
Big kath Big kath

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

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

4 Replies

  • louise666 louise666 Big kath

    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.

    • Big kath Big kath louise666

      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.

  • louise666 louise666 Big kath

    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.

Report as inappropriate

Thanks for your help!

Already approved

You can't report this, it's already been approved by a moderator.



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.