Hair loss

Hi, I thought I was finally getting my 8 month flare under control with having azathioprine dose increased as I think I am generally feeling a bit better with fatigue and joint pain. Was having a lot of hair loss with the flare too and that had seemed to calm down a bit too but last couple of days have noticed its again coming out a lot when I put my hand thru my hair. I don't seem to have loss in patches just general hair loss.

Does anyone know why this is if I was starting to get better??!

6 Replies

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  • Because of the hair cycle, it takes a really long time for your hair to get right after a flare.

    Are you iron deficient? Get it checked and take a supplement if needed. Other supplements that help include biosil, chelated zinc, good quality omega 3 and 6, vit c, biotin.

  • Hi - I wish I knew I have the same thing. My hair loss seemed to have stopped but after a recent flare it is falling out again. I have yet to find a doctor who cares!!

  • Hi Sara_A

    I can fully understand how you must be feeling. Lupus is only fully understood by people who have to experience it.

    I know how devestating hair loss can be, and I have heard that sometimes it can start to come back when you are feeling much better. It all depends on if you have simply alopecia, or scarring alopecia.

    It's hopeful that it is coming out generally and that you are not developing patches.

    I used to be prescribed a steroid loition for mine and maybe that might help you.

    Thinking about you way out there in cyberspace. x

  • Hi Sara_A,

    We published an article on our blog about hair loss in lupus which includes some helpful tips. You can find it at lupusuk.org.uk/coping-with-...

  • That's really helpful thanks. The rheumatologist mentioned that telogen effluvium but I thought he meant it was to do with having had a baby recently and nothing to do with the lupus so that makes sense now!

    I'm also on a few of the drugs mentioned there so that probably doesn't help and I'm also stressed with pain etc at the mo! So got no hope really ha!!

    Hopefully it will calm down soon it's just thinning but end up losing half my hair thickness

  • The same thing has happened to me. I lose lots of hair - it's always clogging up my hoover, builds up on my bedroom carpet really quickly. If I run my hands through my hair, it comes out a great deal. i talked about it with my dermatologist who was sympathetic and recommended something called Regain which she said is available over the counter. I haven't tried it yet so can't comment. So far you can only tell I'm losing hair if I put it up in a pony tail, as you can see it is very thin at the sides. I worry about developing bald patches :(

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