When lupus-related hair loss doesn't scar the scalp, getting lupus activity under better control may allow hair to grow back.

One member connected hair loss to lupus activity. "I lost a lot of hair when my lupus was very active, but still not detectable on regular testing. … Plaquenil has reduced my hair loss drastically." (Plaquenil is a brand name for hydroxychloroquine, a common lupus treatment.)

Another member described seeing scalp lesions improve after staying consistent with lupus treatment. "I've had half a dozen lesions on my scalp. They ranged from dime size to quarter size. They were persistent, but once I was regularly on hydroxychloroquine, they finally dissipated after like three years. In time, the hair began to grow back."

Take lupus medications as prescribed, and tell your rheumatologist if thinning worsens or appears with other flare symptoms.

Contact your rheumatologist or a dermatologist if hair thinning comes with a scaly rash, sores, tenderness, itching, or smooth, shiny patches. Hair loss from discoid lupus — a type of lupus that primarily affects the skin — can be permanent when scarring develops.

One member described how a biopsy (taking a tiny skin sample to look at under a microscope) helped explain a sore on their scalp. "When I first discovered I had lupus, I had this sore in my head that was so annoying. The biopsy confirmed it was lupus."

Early treatment of scalp inflammation may help prevent additional follicle damage, although hair can't regrow from a scarred follicle.

UV light can trigger lupus flares and worsen skin symptoms, especially where hair is thin and part of the scalp is exposed. Reducing direct sunlight exposure may help lower the risk of a lupus flare.

One member recommended, "You must wear a hat when outside, and don't forget the sunblock. I wear a wig, and I also wear a Buff (a stretchy tube of fabric) when I'll be outside for a time, and then my hat."

Health experts recommend using sunscreen, wearing UV-protective clothing, and seeking shade. Ask your doctor or dermatologist how best to protect exposed areas of your scalp.

Gentle care can reduce breakage, even though shampoo itself doesn't treat the autoimmune activity that causes hair thinning. To reduce breakage and damage, choose mild hair products and limit heat styling and chemical treatments.

"I use a semipermanent Clairol dye. No ammonia. No peroxide. Every time I would use regular dye, it would make my hair fall out," wrote one member.

Another found that changing their washing routine helped reduce stress on fragile hair. "I used to wash my hair daily, and that made it worse. I try twice a week now. Get a good conditioner so you're not pulling on your hair," they wrote.

Also, avoid hairstyles that can tug at fragile hair, such as tight braids, buns, or ponytails.

Hair thinning can have more than one cause, including lupus itself, medication side effects, anemia, iron deficiency, or thyroid disease.

"I take thyroid medication that made my hair thin. After being diagnosed with lupus, I noticed my hair comes out every time I brush and comb it. Other medications can thin your hair as well." Some steroids and immunosuppressants used to treat lupus may also contribute to hair loss.

Health experts recommend working with a doctor to review prescription and over-the-counter medicines. If your medical history suggests a bodywide cause of hair loss, you might also ask whether lab testing makes sense. This may include checking for iron deficiency or thyroid disease.

Never stop or change a lupus medicine or start a hair loss treatment on your own. Talk with your healthcare team before making treatment changes.