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Lupus and Hair Loss Through the Lens of an Expert

woman smilingFor the first time in three years, Dr. Nisha Desai and one of her former patients who had been treated for hair loss recently reconnected. Dr. Desai recalled her earlier sessions with the patient, who wore a ball cap at her appointments and always maintained a good attitude throughout being treated for systemic lupus and Hashimoto thyroiditis.

The patient initially came to Desai because doctors couldn’t determine if her hair shedding was from a recent diagnosis of lupus or another disease, but it turned out – to the benefit of the patient – that the hair loss was from alopecia aureata and not from lupus.

When Desai recently saw the patient for the first time in years, she had a full head of hair.

For Desai, it’s a success story, but it proves a point, too, that not all lupus will result in hair loss. Sometimes hair loss can be the result of another autoimmune disease.

“That was a story with a happier ending,” Desai said. “She regrew everything. She’s doing very well (and) she’s on very minimal medication for systemic lupus.” 

Desai, a board-certified dermatologist who subspecializes in hair loss, is one of just two doctors practicing hair loss in the Pacific Northwest, and as a result she sees patients from Oregon, Washington, California and Idaho.

hair_loss_brushShe regularly diagnoses lupus on the scalp, both patchy and diffuse hair loss. It can be a challenging diagnosis that is often times mixed or misdiagnosed because it requires a very trained eye, careful attention to collecting patient history and cautious analysis of biopsies. It’s also common to have lupus in combination with other autoimmune diseases.

For patients, Desai wants them to know lupus is a “treatable, controllable disease.” 

“For many patients, once remission is achieved, the disease can burn out in the scalp. I don’t want patients to be discouraged that this is a lifelong treatment for scalp and skin because there are long enough periods of remission where you can withdraw medication completely and it doesn’t reactivate,” she said.

For providers, she emphasized having patients seek out a hair loss specialist sooner rather than later.

“The game is about preventing further loss. Don’t wait until the hair loss is undeniably noticeable because we can intervene and salvage the rest if we intervene early enough,” she said.

You’ll hear more about these underlying messages about lupus hair loss and the aesthetic ramifications of lupus at the upcoming symposium Lupus Through The Looking Glass at Oregon Health & Sciences University (OHSU) in Portland. It’s free — register here.