Skin sensitivity is a common symptom among people with lupus. This lupus symptom can cause sensitivity to the sun, as well as skin rashes or ulcers around the nose or mouth. Skin symptoms may also indicate a type of lupus known as cutaneous lupus (lupus that affects the skin).
Sensitive skin and rashes can be uncomfortable and frustrating. As one MyLupusTeam member wrote, “I am in the middle of skin flares. I can’t be in the sun at all without problems. Itching and burning all over my body. My hands are red and sore and itchy.” Another shared that they were tired of hearing “‘Your face is so red. Were you at the beach?’ or when it’s winter here in Jersey, ‘Where did you get that sunburn at?’”
Here is what you need to know about skin sensitivity and lupus, including what causes it and how it can be treated. If you are experiencing this symptom, talk to your rheumatologist or a dermatologist. Your health care team can work with you to uncover the cause and find the best way to manage it.
Many MyLupusTeam members have shared their experiences dealing with skin sensitivity. The skin flushing, rashes, and sensitivity that members describe are often caused by a symptom of lupus known as a malar rash (also called a lupus rash or butterfly rash).
Although butterfly rashes often spread across the face, one member wrote that, “My nose is about the only place that doesn’t usually get the rash. The bends of my elbows get super red and itch so badly if I get the least amount of sun, even when driving. It’s crazy how this disorder works.”
Not everyone experiences itchiness when they get a rash. One member shared: “I get a butterfly rash, but it doesn’t bother me. In a flare-up, I get a rash on my back, legs, arms, lips, and chest. It starts to tingle until little blisters appear. The blisters pop, and my skin looks like raw hamburger meat. Luckily, it does not itch. It feels and looks more like a radiation burn.”
Some people find that their rashes come and go. One member explained, “I used to get butterfly rashes, but then it stopped.” Another member wrote, “If I get hot, it pops out, like hot showers or baths or when I get out in the sun.”
Like many others with lupus, this member shared that they also experience mouth sores with their rashes. “It feels like a burn, and the skin peels off,” they said. “Sometimes, it’s red knots that have a white spot on top inside of my lips, and also the red bumps on my tongue that are very painful at the time.” Another member added that although they didn’t get many rashes, “I get mouth sores all the time.”
For some people, rashes are the first sign of lupus. This symptom alone can make diagnosis difficult, as it did for one member: “When my butterfly rash appeared 35 years ago, no one made the lupus connection. Tulsa’s best dermatologist said it was a ‘variation of poison ivy!’ My gynecologist finally diagnosed it correctly!”
In some cases, skin sensitivity and rashes are caused by a particular type of lupus known as cutaneous (skin) lupus. However, systemic lupus erythematosus (SLE) may also cause skin problems, such as a malar rash. Both conditions can cause a person’s skin to become sensitive to light, leading to irritation or rashes.
Cutaneous lupus refers to lupus that affects the skin. This condition is different from SLE. SLE affects the skin as well as other parts of the body. It is possible to have both types of lupus or to have cutaneous lupus but not SLE.
There are several types of cutaneous lupus, and many cause rashes. These rashes can look and feel different — some may itch or hurt, while others do not. Some rashes may be permanent, but many improve or clear up after several days or weeks.
According to the Johns Hopkins Lupus Center, half of the people living with lupus are sensitive to light. This can include both sunlight and artificial lighting that emits ultraviolet (UV) radiation. People who experience this symptom may develop rashes or sunburn-like reactions when exposed to sunlight.
“Every time I get a little Florida sunshine,” explained one member, “I have red flushing on my face, and my nose gets red-hot, literally. I used to love going fishing with my husband, but now, he fishes without me. The ol’ sun’s way too dangerous for me.”
Several types of cutaneous lupus — including discoid lupus, subacute cutaneous lupus, and lupus tumidus — can cause photosensitivity. SLE can also cause photosensitivity. Subacute cutaneous lupus, in particular, can cause photosensitivity that may be triggered by both sunlight and fluorescent light bulbs. Sun exposure can also lead to lupus flare-ups across other parts of the body in people with SLE.
Malar rashes affect about 50 percent of those with lupus. The name “butterfly rash” refers to the rash’s appearance. It often covers the center of the face across the cheeks and the bridge of the nose. Butterfly rashes may be scaly, flushed, or raised. For some, butterfly rashes signal the start of a lupus flare. For others, the rash develops on its own.
Approximately 25 percent of people with lupus develop ulcers (lesions or sores) in or around their nose or mouth. These ulcers may resemble canker sores when they affect the inside of the mouth. Several factors may cause you to develop mouth or nose sores. These include lupus flare-ups, other autoimmune diseases, and the side effects of medications for lupus like corticosteroid medications.
One member with several autoimmune diseases wrote that they experience red sores on their tongue, burning lips, and sometimes blistering when they go to bed. “What I’ve noticed is in the morning, it is all gone,” they said. “I think it is my body telling me I overdid it the day before.”
Another wrote that they noticed tenderness inside their mouth. “I felt bumps inside my jaw and red bumps on my tongue. I also get sores in the corners of my mouth,” they shared. One member even described the feeling as “burning mouth syndrome.” “It’s so painful to eat anything because it is on the roof of my mouth and back of my throat,” they added.
Roughly 10 percent of people with lupus develop hives (urticaria). Hives can cause very itchy bumps or raised patches of skin to form, either individually or in groups. Although hives are most commonly the result of allergic reactions, cases that last longer than 24 hours are usually caused by lupus.
Cutaneous vasculitis is a condition in which the blood vessels close to the surface of the skin become inflamed, limiting the flow of blood. This can cause bumpy, sometimes itchy skin lesions that may resemble hives. Cutaneous vasculitis can result in serious complications if left untreated, so let your doctor know as soon as you develop any new or worsened skin symptoms.
If you develop sensitive, itchy skin or rashes, talk to your rheumatologist or another health care provider. They may refer you to a dermatologist, who can rule out other potential skin conditions and find the right treatment for you.
Make sure to discuss these issues with your doctor right away, as certain conditions (such as cutaneous vasculitis) may cause serious complications. Some types of cutaneous lupus may also lead to skin cancer. Because of this, treating the underlying problem and taking additional steps to protect your skin from the sun are important parts of dealing with skin sensitivity with lupus.
If SLE or cutaneous lupus are responsible for your skin problems, treating the underlying condition is the first step toward improving the symptom. Your doctor may prescribe one or several treatments for lupus, including oral immunosuppressants like hydroxychloroquine (Plaquenil) and methotrexate.
If you develop a butterfly rash, your doctor may prescribe medications to help reduce inflammation. These include topical medications like corticosteroid creams and steroid injections into the affected area.
Sun protection is an important part of managing photosensitivity with lupus. As one member wrote, “I try to avoid the sun and heat in general as much as possible.”
There are several steps you can take to help keep your skin protected from the sun and UV light:
If you experience skin irritation from the sun while indoors, use sun-blocking shades or drapes around windows. If you are sensitive to fluorescent light bulbs, you can cover them with light shields or purchase low-UV lights, like LED lights.
Your doctor may provide prescription mouthwash or toothpaste to help heal mouth ulcers and may recommend steroid nasal sprays for nose ulcers.
As one member explained, “My doc prescribed me with something they call a Magic Mouthwash. I use it before I eat, and it works. When I first got it, I couldn’t eat for three days because the ulcers were so painful.” Another wrote, “My dentist gave me a grainy ointment. It works great. It’s called triamcinolone acetonide dental paste. Goes on grainy, but it turns into a smooth cover over the ulcers. I use it mostly right before bedtime.”
Another member wrote that they’ve been dealing with painful mouth ulcers for over 30 years and have recently found products that help. “The best one is the over-the-counter Colgate mouthwash called Peroxyl. You are only supposed to use it for a week, but my ulcers were gone in five days.”
Some members also find that avoiding certain foods or ingredients helps to prevent irritating existing mouth ulcers. “I noticed gluten brings on more mouth ulcers for me,” wrote one member, “so I try to eat mostly gluten-free.” Another member shared that “salty foods, citrus, and tomatoes can make it worse.” Another wrote, “Lysine helps me keep them away. Salt water helps me heal them.”
Are you or a loved one living with lupus? Consider joining MyLupusTeam — the online social network and online support group for those living with lupus. Members talk about a range of personal experiences and struggles. You can also ask and answer questions, join ongoing conversations, and offer support and advice. Before you know it, you’ll have a team of more than 214,000 members from around the world who understand life with lupus.
Have you dealt with skin sensitivity while living with lupus? How have you managed it? Share your story or tips in the comments below or by posting on MyLupusTeam.