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I have lost hair, some is growing back but it's now very kinky but still have bald spots. I wear wigs now. Anyone else have the same issues

A MyLupusTeam Member asked a question 💭
Mooresville, NC

I have SLE, diagnosed 2 years ago. Fibromyalgia diagnosed 25 years ago. Underlying issues, mini stroke 6 years ago, bradycadia 3 years ago. Symptoms of sle started 6 years ago with severe vertigo rash on face and arms, joint pain, eye issues, hair loss.

August 18
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A MyLupusTeam Member

I lost a lot of hair last year due to a few things-lupus, menopause and medications. I also had a stroke which the timing of hair loss, makes me think added to the loss My derm prescribed clobetasol and I also found shampoo bars (Humby blueberry fields) that supposedly helps smooth gray hair and promote hair growth. I wasn’t hopeful but they worked! My hair is coming back! It’s now coming in curlier but it’s there! Also, because it’s curlier, I don’t really have to dry it anymore.
Hang in there, I thought losing my hair was one of the most devastating parts of my lupus. Now a year later, it’s hard to notice.
Good luck!

August 18
A MyLupusTeam Member
August 18
A MyLupusTeam Member

I lost my hair three times. Each time, it returned with a different texture.

August 18
MyLupusTeam

Hair loss is incredibly common with SLE — studies suggest up to 85% of people with SLE experience it at some point. The change in hair texture when it grows back (like the kinkiness you're describing) is something others have noticed too. You're definitely not alone in this.

The good news is that with SLE-related hair loss Show Full Answer

Hair loss is incredibly common with SLE — studies suggest up to 85% of people with SLE experience it at some point. The change in hair texture when it grows back (like the kinkiness you're describing) is something others have noticed too. You're definitely not alone in this.

The good news is that with SLE-related hair loss, the follicles aren't always permanently destroyed, which is why regrowth is possible — though it can come back differently than before. A MyLupusTeam member shared a similar experience, noting significant hair thinning and uncertainty about whether lupus itself or medications were the cause — since both can contribute.

It's worth talking to your rheumatologist about your hair loss, as there are options that may help:

- Topical steroids (like clobetasol) can help stimulate regrowth
- Adjusting medications if a drug is contributing to loss
- Disease management — better lupus control often helps with hair symptoms

In the meantime, wigs are a great practical solution! A MyLupusTeam member recommended the Raquel Welch wig line as natural, lightweight, and comfortable. Scarves and hats are also popular options among members.

Make sure to check with your rheumatologist before trying any over-the-counter hair loss treatments, as some can interfere with lupus medications.

August 18

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