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A MyLupusTeam Member asked a question 💭
Boston, MA

I’ve started noticing that my hair has been falling out in clumps like a handful in the shower. Combing and even touching my hair seems to make some fall out. I haven’t had issues with hair loss since the beginning of my diagnosis. Any suggestions on anything that could help? I’m currently on Benlysta, Cellcept, plaquenil, very low dose prednisone.

Thanks in advance

October 6, 2020
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A MyLupusTeam Member

I’m thinking about getting a wig or two

October 22, 2020
A MyLupusTeam Member

I initially experienced hair loss about 4 months after my diagnosis. I was told that my body was under so much stress from the nasty flare up I had that the hair loss was a side effect of lupus and lupus flares. Then I noticed it was a seasonal thing for me, more around the holiday season than other time. My hair currently is okay, growing and not really falling out as much. I take biotin everyday, use sulfate free shampoo & conditioner, qilib (a revitalizing hair growth spray for women, it's on amazon), I also use rosemary and thyme water to wash my hair.

October 21, 2020
A MyLupusTeam Member

You can try collagen power it helps alot It also helps pain too you can buy it at costco are most pharmacies. It helps but u have to use it daily Its sometimes gets expensive. I put it in hot tea if you drink coffee it's good in it also it has no flavor

October 11, 2020
A MyLupusTeam Member

That’s one of things that lupus does, it makes our hair thin/fall out.
There are vitamins for hair and nails and there’s shampoos that help. Massage your scalp, gently with your finger tips.
Don’t over work your hair (blow outs, color, curling iron etc). Leave your hair alone when you can, no braids or ponytails. In fact don’t wash it every day. You can wet it in the shower but don’t use shampoo.
Good luck.

October 6, 2020
A MyLupusTeam Member

I also have adrenal insufficiency so I have to keep prednisone on me at all times. Cortisol levels are below low normal. I had fallen out of the blue two-3 times recently, no fainting nor loss of consciousness After an MRI of my brain, a CAT scan, blood pressure checks sitting, standing laying down and 24 he urine collection for cortisol and blood work. That’s how it was figured out

October 11, 2020

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