Finding more hair than usual in your brush, shower drain, or pillowcase can be alarming, especially when you’re living with lupus. Lupus hair loss, or lupus alopecia, looks different from person to person. Your part may look wider, your edges may seem thinner, or a bald patch may not fill back in.

“I’m so discouraged by my hair loss, sometimes more than the fatigue and Raynaud’s,” shared one MyLupusTeam member.

If you’re dealing with lupus hair loss, one of your biggest questions may be whether your hair will grow back. Here’s what you need to know about the types of hair loss linked to lupus, available treatments, and ways to care for your hair and scalp.

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What Is Autoimmune Hair Loss?

Autoimmune hair loss happens when an overactive immune system attacks the hair follicles or disrupts normal hair growth. Hair follicles are tiny pockets in your skin where each hair grows.

Several autoimmune diseases can cause hair loss, including both cutaneous lupus and systemic lupus erythematosus (SLE). Studies in different groups of people show that between 17 percent and 85 percent of people with lupus may experience hair loss or scalp lesions, which can appear in different patterns.

How Does Lupus Affect Hair?

Lupus is an autoimmune disease where the immune system attacks healthy body tissues. Sometimes it targets and kills hair follicles, tiny sacs in the skin from which individual hairs grow. Hair growth may resume if inflammation is treated before hair follicles are permanently damaged.

Two other types of hair loss, scarring alopecia and nonscarring alopecia, are directly linked with specific types of lupus.

Scarring Alopecia

Scarring alopecia is a symptom of discoid lupus erythematosus (DLE) or discoid lupus, a type of lupus that typically affects the skin alone. People with DLE can develop discoid lesions on the skin, which usually appear on light-exposed areas of the body.

Between 30 percent and 50 percent of discoid lesions usually appear on the scalp. “Now I’m having these lesions pop up on my scalp with surrounding hair loss and they’re very tender and swollen,” a MyLupusTeam member shared.

If left untreated, the lesions can scar, blocking or destroying hair follicles and leading to permanent hair loss.

Nonscarring Alopecia

Nonscarring alopecia is associated with SLE, the most common form of lupus, which affects several different tissue types in the body. One study found that more than half of participants with SLE experienced hair loss at some point. Hair commonly becomes thin and brittle in this form of hair loss.

If the underlying cause is treated, hair growth may resume for some people with nonscarring alopecia.

Can Lupus Hair Loss Be Treated?

If hair loss is caused by discoid lesions, it may be treatable if addressed early, but may not be reversible once scarring is present. This doesn’t mean that discoid-lesion-related hair loss can’t be treated at all. Work with a rheumatologist and a dermatologist to help treat your hair loss.

Topical steroids and oral medications may help stop the spread of discoid lesions, so it’s important to seek treatment early.

Hair loss caused as a medication side effect may be temporary, and it’s important to treat your lupus first. Once the disease is under control, talk to your doctor about hair loss or any other side effects you experience from treatment. Never stop taking a medication without speaking to your doctor first.

Tips for Preventing and Managing Hair Loss

The best way to treat hair loss in lupus is to address the condition itself. The following steps may help you reduce breakage, traction, or scalp irritation but can’t prevent all lupus-related hair loss or regrow scarred hair.

Treat Your Hair Gently

Take steps to prevent further damage to hair. “I don’t color or put any chemicals [on my hair], don’t blow-dry, just wash, dry naturally, and comb gently,” shared one MyLupusTeam member.

There are several ways to treat your hair gently:

• Let your hair air-dry whenever possible.
• Avoid hairstyles requiring tight pulling or hair rolling.
• Limit how often you apply heat to your hair.

Limit UV Exposure

Some types of lupus can cause you to be more sensitive to light. Damage to the hair and scalp from light sensitivity can lead to additional hair loss. To limit exposure to ultraviolet (UV) light:

• Layer your clothing.
• Wear a water-resistant sunblock of SPF 30 or greater on any exposed skin — including your scalp.
• Wear a wide-brimmed hat or carry an umbrella.
• Stick to the shade whenever possible.
• Consider replacing or removing any home lights that emit UV light.

Minimize Stress

Stress may cause hair shedding as well as lupus flares in some people. But stress hasn’t been established as a universal cause of lupus flares. There are many ways to reduce stress, including:

• Moving your body when possible
• Engaging in relaxing activities, such as meditating or listening to calming music
• Taking a warm bath

Reduce Flare Triggers

By managing your lupus triggers, you can reduce flare-ups that can lead to hair loss. According to MyLupusTeam members, common triggers include:

• Weather
• Stress
• Exhaustion
• Factors related to diet

Ask About Your Medications

A doctor may prescribe the hormone dehydroepiandrosterone (DHEA) to address symptoms of lupus, including hair loss. But keep in mind that DHEA isn’t approved by the U.S. Food and Drug Administration (FDA) to treat lupus and isn’t a routine hair-loss treatment. Only use it when prescribed and monitored by a clinician.

Topical and injectable corticosteroids help treat inflammation and may allow hair growth when follicles aren’t scarred.

Minoxidil (Rogaine) — which is sold over the counter to stop male- and female-pattern baldness — doesn’t treat underlying lupus. But a dermatologist may sometimes recommend it along with lupus treatments in select instances.

Additionally, bear in mind that some medications for treating lupus, including steroids and immunosuppressants, can contribute to hair loss. You can talk to your doctor about possibly changing your dosage or changing to another medication.

Consider Vitamins and Supplements

Over-the-counter supplements, such as biotin, may help with hair loss if you have a documented deficiency or if a clinician recommends these supplements. Keep in mind that high-dose biotin can interfere with some laboratory tests, leading to misdiagnosis, so always tell your healthcare provider prior to lab testing if you’re taking it.

There are no quality research studies that support biotin’s hair growth benefits, but it is nonetheless popular. Biotin is available in supplements and also occurs naturally in foods.

As with prescription medications, speak with your doctor before you start any supplements. They can help you choose a regimen that fits your particular condition.