I had massive hair loss. It seems it falls out during severe flares. I do take 10,000 btu of biotin. My hair is growing back and I now have short hairs popping up.

@A MyLupusTeam Member, yes i went to the dermatologist. The lotion works good for the scalp but the less hair you have the better treatment response. At least in the beginning. I cut my hair to almost bald and now I'm back to shoulder length hair. All is not lost ladies just take 1 step at a time and remember no matter what you do with your hair you are beautiful. If you own it everyone else will fall into step with you.

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A MyLupus...

I'm so sorry!!! I know what you're going through. I HATE lupus!!!!!!

My hair has been falling out in a shower of loose hair all over everything I'm around or what I'm wearing or where I'm sitting or in bed. I have to use a sticky roller everywhere I go. Must "roll" my bed & pillow before I lie down, or I have loose hair sticking into my nose, mouth, eyes -- miserable. Loose hair falls between my sunglasses and eyes, and I dig to find it to remove it (sun sensitive). Damp paper helps wipe the hair from the lavatories, tables, desks and bath tub drain,

I had a panel of tests and found that for the first time in my life, my thyroid level had become high (the gland is shriveled/not functioning - I supplement), but I felt better, more energetic, felt less pain and had a "happier" outlook than I have had for a couple years. My discolored fingers had turned pink again (actually felt pain when they came back to life), my balance was better. I don't want to lose those benefits.

I retained lots of other hurtful things, such as gut, chest pain, esophageal spasms, crazy heart beats . . . but I hate the thought of losing this "good" thing.

I volunteered to let the hair go, wear a wig, and leave the supplement level alone. The doctor, of course did not think that was the best thing for my bones, etc.

I wish you all well. Keep on talking.

Mine has been falling out for years. My hair falls out mostly when I shower and after dying it. I started using baby shampoo and conditioner and it helps. Some hair still falls out when I shower, but not as much. Luckily, my hair grows back quick, so I've never had any bald spots. Hope this helps.