For many people, lupus affects the skin on the top of the head, with itchy rashes, skin lesions, or alopecia (hair loss). Scalp pain typically doesn’t accompany these symptoms, yet several members of MyLupusTeam have shared stories of a painful, tender scalp.
“I have had scalp sores since I was a kid,” one member said. “They are red open sores with some scaly dry skin surrounding them. They eventually scab over, but the scabs get knocked off just brushing and washing my hair or running my fingers through my hair.”
Another shared, “I get sores on my head. They are little bumps. I always thought I was getting bitten by insects. I never thought of it as a part of having lupus.”
Here’s what you should know about the potential connection between scalp pain and lupus, along with treatment options to consider.
Skin issues are common with systemic lupus erythematosus (SLE), the most common type of lupus, but are a hallmark of cutaneous lupus erythematosus (CLE). CLE is a form of lupus in which your autoimmune system attacks your skin, leading to sores, lesions, or rashes. The most common subtype of CLE is called discoid lupus erythematosus, or discoid lupus, which can cause rashes or scaly patches, usually on the scalp and face.
“My scalp sores are tender to touch,” wrote a MyLupusTeam member. “During one particularly bad episode, they caused glands that I didn’t even know were there to swell near the base of my skull. I’ve just started hydroxychloroquine (Plaquenil) about three weeks ago but wanted to find out if they are indeed lupus related.”
It’s possible that your scalp pain is not directly related to lupus. Other potential causes of scalp pain include:
Certain hairstyles, such as tight braids, ponytails, or heavy hair extensions, can sometimes cause scalp tension and pain. Avoiding tight hairstyles can have the added benefit of mitigating hair loss from lupus.
Talk to your rheumatologist if you’re concerned that your scalp pain is related to lupus. They may suggest lifestyle approaches, such as covering your scalp when you leave the house, or recommend medications to relieve pain. It’s also helpful to ask if your current lupus medications can help manage your scalp symptoms.
Many people with lupus experience photosensitivity, or sensitivity to ultraviolet light. Sun exposure can lead to lupus flare-ups that could include a worsening of scalp symptoms. Even if you have hair, your scalp can be vulnerable to sun exposure, particularly at your hairline, part, or any areas of thinning or balding.
Wearing a hat or other head covering and applying sunscreen to protect your head from sun exposure can help prevent painful inflammation on the scalp, as well as other SLE symptoms like fatigue or joint pain. “The sun is a real problem if you have lupus sores on your scalp. I wear a hat when I’m outside,” one MyLupusTeam member commented.
Members of MyLupusTeam report using topical treatments on their scalp to help ease swelling or inflammation. Many of these treatments are used for other autoimmune diseases that affect the skin, like eczema or psoriasis. Your doctor can help you understand if they’re appropriate for you.
“My doctor gave me a clobetasol 0.05 percent solution to apply to my scale twice daily. It seems to work but leaves your hair looking a mess,” wrote a MyLupusTeam member.
Clobetasol ointment is a topical steroid that lowers skin inflammation associated with conditions like psoriasis and eczema.
Another member shared, “I use Zatamil 0.1 percent lotion.”
Zatamil is a formulation of mometasone, a corticosteroid that also helps reduce inflammation and discomfort and is used to treat psoriasis and eczema.
Talk with your health care provider if you’re wondering whether topical treatments could ease your scalp pain. Before using topical steroids, let your doctor know if you have diabetes, are pregnant or trying to become pregnant, are breastfeeding, or are allergic to any medications.
Your rheumatologist or health care provider may suggest nonsteroidal anti-inflammatory drugs (NSAIDs), like ibuprofen (Motrin), for temporary pain relief. However, NSAIDs are generally not advised for people with kidney problems, such as lupus nephritis (a type of kidney disease). Acetaminophen (Tylenol) is generally considered safe for occasional use in people with kidney disease.
Discuss any new treatment option, whether it’s by prescription or over the counter, with your health care provider. Like prescription drugs, OTC products can have side effects or possibly worsen lupus nephritis or another health condition. By working closely with your doctor, you can determine the safest, most effective treatment plan to help manage all your lupus symptoms.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 people with lupus come together to ask questions, give advice, and share their stories.
What parts of the body are most impacted by your lupus? Do you have any tips for managing scalp pain? Post your thoughts in the comments below, or start a conversation by sharing on your Activities page.