Hair loss

Hi Karen6,
Thanks for reaching out. Hair loss is a common symptom of lupus as well as a side effect of some of the drugs used to treat it. Your daughter may want to reach out to her doctor to discuss this concern. Her healthcare provider may be able to adjust the drug/s she takes if that is the reason behind her hair loss. Hair loss caused by medication is often reversible.
Some suggestions within this community include protecting hair by washing it with baby shampoo, using a leave-in conditioner, and avoid using heated tools on hair as much as possible. This article may provide some additional information: https://lupus.net/symptoms/hair-loss. Please send your daughter all our best.
~Doreen (Team Member)

Hi! I hate to hear that your daughter is struggling. I’ve gone thru many cycles where I lose a lot of hair. I’ve currently been in one for awhile. The things I’ve found that help me may not help her. But I’ll share. First, I take a daily vitamin that has folic acid in it, and also take a daily biotin supplement. She should check with her dr, of course, before adding any vitamin or supplement. Beyond that I try to leave my hair alone, meaning I try not to brush it super often, only when I have to. Bc for me the more I brush it the more it falls out. Also I have trained my hair so I only wash it like once a week. Bc for me it falls out by the handful when I wash. So she will just have to try and find what works for her. Bc not everything that works for me might not work for her. But off topic, I love that you are a super involved mama who is doing her best to help. My mom is my biggest advocate and I don’t know what I’d do without her.


Amber (lupus.net team moderator)

This seems to help me, but may not help your daughter. I take ARMRA. It's a bovine colostrum product, along with a hair loss vitamin from the drug store. Super weird, but yes, it seems to help. When I tried stopping the ARMRA and only took the vitamin, the hair loss came back.