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A myRAteam Member asked a question 💭
Little Rock, AR

I have always had really thick and long hair. Ever since my first and only infusion of actemera my hair has been falling out at an alarming rate! My hair dresser noticed loose hair on my shirt and commented on it saying he had clients like that and it was thyroid related. He said he noticed that my hair felt thinner but said there wasn’t any bald spots. I went to my dr and he tested me for thyroid and said that tests came back normal. I’m on methotrexate but the dose is the same for 4 yrsand… read more

August 10, 2018
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Answer Summary

Members rallied around someone experiencing alarming hair loss after starting Actemra, with the overwhelming consensus being that increasing... Read more

Members rallied around someone experiencing alarming hair loss after starting Actemra, with the overwhelming consensus being that increasing folic acid intake (ranging from 2mg to 10mg daily) is the most important first step, as many shared that higher doses helped slow or stop their shedding. Several members recommended practical strategies including biotin supplements (such as Nature's Bounty Hair, Skin and Nails gummies), adding cold-pressed castor oil to shampoo, switching to natural hair care products, avoiding chemical treatments like coloring, and ensuring adequate protein and vitamin D intake. A recurring theme was the deep emotional toll of hair loss on confidence and femininity, met with compassionate encouragement that beauty transcends hair, alongside hope that with the right combination of supplements, gentle hair care, and patience, regrowth is possible.

A myRAteam Member

Thanks everyone. I’ve been on methotrexate for four years now and it’s only after taking that biological infusion that this new side effect happened. After I took it I got violently ill and my skin hair and nails have been brittle and rashes ever since. The hair thing is so upsetting though. I’m shedding more than my husky dog did. It’s everywhere.

August 10, 2018
A myRAteam Member

I definitely have had hair loss. It comes and goes in waves which lead me to chop off my hair and contemplate shaving my head. This really kick started after an experiment with Avara, yet has been something I have dealt with since starting any RA meds. It's a common side effect for almost all of them I have been on.
I do want to tell you that it will be ok. It's scary sucks and shakes your confidence. You are beautiful and hair will not change that. <3
It's amazing and so complicated how hair and femininity are tied together. I never fully realized how losing hair would rock my confidence. (all the tears girl. ALL of them)
I have an amazing hairdresser who helped me rock a badass pixie cut and another friend who found me shampoo to slow this process down a bit and make my tired strands look an feel thicker. Blow dryer, dry shampoo, and volumizing anything are helpful.
I take a crap ton of supplements, biotin, and omega, 3, 6 and DHA are the ones that seem to affect my hair the most. I am currently going through a period where my hair is falling out, causing old man bald spots... but eh f' it. All I need is a gorgeous turban, winged eyeliner, and red lipstick. Maybe it will grow back, may it won't. I just know that it's not what makes me a woman, or sexy, or me. So cheering for you! <3

August 15, 2018
A myRAteam Member

I take 2 folic acid tablets daily. Except on the day I take the metho. Its not a cure all. But it helps.

August 14, 2018
A myRAteam Member

My rheumatology nurse practice round put me on 4 mg of folic acid when I started my Methotexrate and I an not losing hair. My Vit D was low so she added D3 5000 mg. my nails were splitting and soft and now they are strong. I have thin hair it stopped thinning after I stopped coloring it. It also started when I was taking a hormone replacement Evista . Stopped falling out . I add a little cold pressed castor oil with my shampoo and my hair is in really good condition. About a capful and not every shampoo.

August 13, 2018
A myRAteam Member

When I was on methotrexate I would take folic acid supplement and a vitamin B complex i would take one with lunch and one with dinner. Seem to help me.

August 10, 2018

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