Hair loss

[Glyn612]

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

[MadMazzy]

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

[Glyn612 in reply to MadMazzy]

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

[MadMazzy in reply to Glyn612]

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

[Glyn612 in reply to MadMazzy]

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!!

[MadMazzy in reply to Glyn612]

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

[Glyn612 in reply to MadMazzy]

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

[MadMazzy in reply to Glyn612]

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

[BoneyC]

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.

[Glyn612]

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.

[DaniBeeLcLa]

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!

[Glyn612 in reply to DaniBeeLcLa]

Thanks. I'll try anything!

[JennyA123]

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 😊

[Glyn612 in reply to JennyA123]

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

[JennyA123]

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.