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Hair loss is a common symptom of lupus — and also a possible side effect of some medications used to treat the condition. In fact, the symptom has a nickname: “lupus hair.” Hair loss, or alopecia, refers to hair thinning or falling out in patches. In most cases, hair loss associated with lupus occurs in the hairline and on the scalp — but sometimes eyelashes and other body hair is affected as well.
There’s little research on exactly how common alopecia is in people with lupus, and its severity can vary depending on a person’s specific diagnosis. In one study, four women with the condition all experienced hair loss, from 55 percent to 100 percent of scalp hair.
More than 33,000 MyLupusTeam members have reported hair loss as part of their condition. “I lost all my hair due to lupus: body hair, head, eyebrows, and eyelashes,” shared one member.
Hair loss can take mental and physical tolls on people with lupus. “I am so discouraged by my hair loss, sometimes more than the fatigue and Raynaud’s,” wrote a MyLupusTeam member.
Fortunately, treatments are available for treating lupus — and with it, the associated hair loss.
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 follicles destroyed by this inflammation have a chance to regenerate — if they’re treated early.
Two other types of hair loss, scarring alopecia and nonscarring alopecia, are directly associated with specific types of lupus.
Scarring alopecia is a symptom of discoid lupus erythematosus (DLE) or discoid lupus, a type of lupus that typically affects the skin alone. A person with DLE can develop discoid lesions (skin lesions), which usually appear on light-exposed areas of the body. Between 30 percent to 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 is associated with systemic lupus erythematosus (SLE). SLE is the most common form of lupus and affects several different types of tissue in the body. Over half of the people diagnosed with SLE experience hair loss at some point. Hair commonly becomes thin and brittle in this form of hair loss.
Nonscarring hair loss is thought to be caused by the body’s hair follicles resting when lupus is very active in the body. Because the follicles aren’t destroyed, hair regrowth is still possible.
Other factors may contribute to hair loss in people living with lupus. Some hair loss is natural: People commonly shed as many as 100 hairs in a day.
Stress, too, can lead to hair loss, and if you are living with lupus, you may be experiencing stress from the condition and its impact on your life.
Some drugs used to treat lupus can cause hair loss as a side effect. Members of MyLupusTeam have shared their experiences with different medications and their effects.
If hair loss is caused by discoid lesions, it cannot be reversed once scarring is present. However, this does not mean that discoid-lesion-related hair loss cannot be treated at all. Topical steroids and oral medications can help stop the spread of discoid lesions, so it is important to seek treatment early.
Hair loss caused as a side effect of medication is usually temporary and can be reversed when the medication is stopped.
It is most important to treat your lupus first. Once the disease is under control, address your hair loss. Talk to your doctor about hair loss or any other side effects you experience from treatment.
There are several different ways to prevent or reduce hair loss associated with lupus.
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.
Lupus can cause you to be more sensitive to light. This can lead to additional hair loss as the hair and scalp are damaged. There are several ways to limit exposure to UV light.
Stress can cause hair loss as well as lupus flares. “Lupus seems to get activated by the stress hormones,” a MyLupusTeam member commented.
There are many ways to reduce stress, including:
By managing your lupus triggers, you can reduce flare-ups that can lead to hair loss. According to MyLupusTeam members, common triggers include:
There are several possible approaches to managing hair loss for people with lupus. They include prescription and over-the-counter medications, vitamins and supplements, and cosmetic techniques, including wearing head coverings and changing hairstyles.
Remember that the best way to treat hair loss in lupus is to address the condition itself. When your lupus is under control, hair loss becomes less of an issue. Also, before trying any new treatments — even over-the-counter medications — confer with your health care provider first.
A doctor may prescribe the hormone dehydroepiandrosterone (or DHEA for short) to address symptoms of lupus, including hair loss. DHEA is also sold as an over-the-counter supplement, but it’s recommended you only take it as a prescription, to ensure you take the specific amount recommended by your doctor. According to John Hopkins Lupus Center, “Men with lupus should not take DHEA.”
Topical and injectable steroids can help with hair growth. One MyLupusTeam member reported that their doctor gave them an injectable along with other treatments: “A dermatologist put me on minoxidil, biotin, and steroid injections in my scalp.”
Notably, Rogaine (minoxidil) — which is sold over the counter to stop male and female pattern baldness — is not recommended for treating lupus-related hair loss. It is for a different type of hair loss entirely.
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 reducing or stopping medications that are causing your hair loss.
Over-the-counter supplements can sometimes help reduce hair loss. Several MyLupusTeam members have reported success with the supplement biotin, known as vitamin B7. Biotin is available in supplements and also occurs naturally in foods. “I use biotin [and it] works great ! Most of my hair [is] growing back!” wrote one member, while another said, “I take a biotin supplement for hair loss and it does help.”
Other MyLupusTeam members have found folic acid — another B vitamin — helpful in treating hair loss. Folic acid can be found in supplements. Some foods, including breads and cereals, are also fortified with it. “My doctor recommended [folic acid]. I still lose hair but not as much,” wrote one member. Another member trying it out said, “I don’t see any difference.”
Combining supplements has also proven successful for some MyLupusTeam members. “I take the max dose of biotin every day and it has helped tremendously, along with fish oil, vitamin D and C, and a [multivitamin],” one member wrote.
“I take [N-acetyl cysteine], DHEA, fish oil, and vitamin D. My rheumatologist put me on all of them,” wrote another.
As with medications, speak with your doctor before you start taking any supplements. They will be able to help you choose a regimen that fits your particular condition.
Finally, MyLupusTeam members experiencing hair loss have shared ways they’ve adapted their physical appearance.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 188,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Do you have lupus-related hair loss? What do you use to treat it? Share your experience in the comments below, or start a conversation by posting on your Activities page.