Hair loss: Hi, is anybody out there on... - NRAS

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Hair loss

Hi, is anybody out there on hydroxychloroquine (HCQ) and if so have you noticed any significant hair loss? I'm balding at the temples and receding at the front of the scalp and I want to know whether HCQ is responsible or whether it's something genetic. Thanks x

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Hi Glynisdyson,

I've been on hydroxy over 2 years. Initially I had some hair loss, but the worse thing was dryness and breakage due to this; my hair was like candy floss. I have played about and now use a moisturising shampoo and conditioner, argan oil on towel-dried hair, then a leave-in conditioner. It's a faff but my hair is lovely now.

Good luck

Mary xx

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Hi Mary, thanks for your reply. Yes, I have breakage at the front and sides but otherwise my hair is in not bad condition. I have some argan oil, and will start to use that - good idea. I hadn't thought about leave-in conditioner. Do you use any one in particular? Glynis

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I the use Regis olive oil one. I have curly/wavy, thick hair anyway. But this has helped so much . It's trial and error how much you need. I've had a few times looking like I've poured a chip pan on my head 😊.

Good luck xx

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Sorry, also what dosage of HCQ are you on? I was on 40mg for two years, when the consultant this year said that I should only have been on that dosage for the first couple of months and then it should have been half that!!

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I'm on 400mg a day and on 25mg methoject. They tried to half hydroxy after 1 year, but I went downhill so they upped it again. Xx

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Thanks. That would seem to indicate that maybe it isn't responsible for my hair loss. I'll continue to research. x

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I think I'm one of the lucky ones. I'm on a different forum, and lots of people on there suffer with hair loss 😢 Good luck xx

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Have you had your Hb & ferritin levels checked? I've been on HCQ over 8 years & MTX over 30 years and I haven't had hair loss/thining before, so it's unlikely to be the drugs. However, my Hb levels are always just under normal but GP ignores this. When I presented with hair loss, a GP checked ferritin levels which were 49. She told me to take ferrous sulphate (iron tabs 200mg one a day) until ferritin levels get to 150 and hopefully that will stop my hair falling out.

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Thanks; I had bloods done today and iron levels are being checked. I'm taking iron supplements but I'll look into the ferrous sulphate thing.

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Hi Glynis! Try adding folic acid and a "hair, nails and skin" vitamen supplement- -make sure it has biotin in it. I too take plaquinil--I was getting thinning at my widow's peak and my nails were a mess, thin, breaking all the time. Rheumy added prescription strength folic acid and my manicurist recommended adding the hair, skin and nails. Hair is looking better and nails too.

Good luck!

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Thanks. I'll try anything!

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Yes I had the same problem I did stop all meds and still thin hair, I went to the Dermatology and told me to use Rogaine foam for man and is working now my hair fills thicker and fuller.. tryit is wort it good luck 😊

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Thanks. Can I just ask why you had to have the foam for a man and not a woman? Are you back on the drugs again now? What drugs do you take? Thanks

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I really think they don't make it for women's as strong that the man.. and I not on any meds now my rheumatology gave up on me I guess she send me to a pain Dr. And im just doing Accuponture once a week and it has helped a lot ! I have flares but it got betters after my Accuponture.

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