People with lupus often face a common issue — photosensitivity. This means they are sensitive to the sun or ultraviolet (UV) light that causes skin rashes and other irritating symptoms. The Lupus Foundation of America estimates that somewhere between 40 percent and 70 percent of people with lupus experience photosensitivity.
More than 11,000 members of MyLupusTeam, the online social support network for people with lupus, report light sensitivity as a facet of their lupus. One member who previously enjoyed going out in the sun said, “I’m just so sad because I love the sun.”
Another reported various sun-related symptoms: “It makes me feel that my skin is burning. The sun gives me dizziness, extreme fatigue, and excessive sweating.”
Read on to learn more about how the sun affects lupus symptoms and tips for managing sun exposure.
Three types of UV rays make up sunlight: UVA, UVB, and UVC. It is important to note that UVC rays typically do not make it to Earth and are not part of the UV light that affects people with lupus.
UVA rays are sometimes called “burning rays.” Most are blocked by the ozone layer, but around 10 percent make it to the ground. UVB rays are known as “tanning rays” and are the main cause of sunburn and skin damage. UVA and UVB rays can cause skin damage in lupus, although UVB rays are more likely to do so.
An autoimmune disease is a condition in which the body’s immune system mistakenly attacks its own healthy cells and tissues. When UV rays cause damage to exposed skin, the immune system normally removes the affected skin cells. However, when a person has lupus or another autoimmune disease, their immune system cannot clear out those cells as quickly. When those damaged cells stick around, the immune system fights them, which makes the skin rash last longer.
People with cutaneous lupus erythematosus (CLE) and systemic lupus erythematosus (SLE) can be affected by sun and UV exposure, although symptoms may show up differently. SLE aggravated by sun exposure is associated with the classic “butterfly rash” across the cheeks that is considered a recognizable sign of the condition.
CLE is usually associated with scaly discolored circles or disc-shaped lesions. Scarring can also occur with CLE and sun exposure. A member reported, “I have trouble with a rash on my face after being in the sun.”
Another said, “I always get a rash if I have been out in it too long.”
To make matters more complicated, the autoimmune reaction can cause a lupus flare, worsening lupus symptoms like fatigue and joint pain. “The weather and sun make my lupus flare up,” one member reported.
“The biggest trigger of all is the heat and the sun,” stated another.
Some MyLupusTeam members have reported generally feeling sick after being outside in the sun. One member reported, “I get nauseous and weak, and my joints ache even when driving in the sun.”
A second member agreed: “I have noticed the sun really drains my energy.”
Certain medications can make photosensitivity worse or cause it in individuals that normally do not have it. Ask your doctor how your medications may affect photosensitivity.
Nonsteroidal anti-inflammatory drugs (NSAIDs) commonly used to treat the symptoms of lupus (like joint pain and inflammation) are one class of drugs that can make photosensitivity worse. Some people who take ibuprofen (Motrin) or naproxen may develop a skin rash after sun exposure. This rash is more common for those who take naproxen, although people who take ibuprofen can also be affected.
Another commonly prescribed drug for lupus, hydroxychloroquine (Plaquenil) is known to reduce the damaging effects of UV light. But just taking hydroxychloroquine alone should never be considered adequate sun protection.
Despite this finding, several MyLupusTeam members reported their light sensitivity was affected by taking the drug. “I am convinced the Plaquenil caused me to burn much faster than normal,” said one member.
Another couldn’t sort out the lupus symptoms from those caused by medication: “Direct sunlight makes me feel sick and exhausted now. I don’t know if it’s Plaquenil or lupus.”
For most people, avoiding the sunlight entirely isn’t reasonable. Following are several different ways to manage sun exposure when it can’t be avoided.
When going outside, it’s crucial to always wear sunscreen, ideally with an SPF of 70 or higher. This essential step helps shield the skin from harmful UV rays and reduces the risk of photosensitivity reactions.
One MyLupusTeam member found that an even stronger sunscreen worked better. “I found 100 SPF — it’s helped hugely!”
Sunscreen should even be worn under clothing because most clothing only offers an SPF of about 5.
Some members recommend using sunscreen that contains Helioplex, which blocks more rays for additional protection. “I stick to reapplying every hour, and I feel grateful that I have been able to go out directly in the sun for a couple of hours with no issues,” said one member.
You should reapply sunscreen every two hours when spending time in the sun — and also after getting wet. Clouds don’t block most UV rays, so you should still wear sunscreen on cloudy days.
If you’re especially sensitive to the sun, wear protective clothing. There are laundry additives that can increase the protective factor of ordinary clothing, but the most effective way to deal with the problem is to buy special clothing made with sun-protective fabric.
One member said, “I love the company Coolibar. I buy their simple long-sleeved T-shirts, and I actually wear their men’s long pants because I’m tall and they are very thin and cool.”
Sun-protective clothing is usually available at sporting goods stores and will be labeled with the SPF factor.
A large-brimmed hat can be used to keep the sun off your face and large, wraparound sunglasses can protect the eyes. “Dark polarized sunglasses,” one member recommended.
“I wear a hat and sunblock every day,” another said.
One member found even the strictest measures didn’t always help: “Although I slathered on sunscreen, wore three-quarter sleeves, a wide-brimmed hat, cropped pants, and carried an umbrella, I still had sun exposure.”
Even with all these measures, you’ll need to keep sun exposure to a minimum. Keep track of how much time you spend in sunlight. “Wearing UV clothing, you still have to watch out how long you’re in the sun,” one member said.
There are apps available that allow you to input your skin type and your sunscreen’s SPF factor and count down how much longer you can safely spend outdoors. Avoid going outside from 10 a.m. to 4 p.m. when the sun’s rays are the strongest.
MyLupusTeam members reported several additional ways to deal with sun exposure. “Get your car windows tinted,” one advised.
Another member said, “I carry an umbrella when I go to the beach. I always wear a wetsuit and sun-protective clothing.”
A third said, “I have this cooling rag that I soak in cold water and use when it’s really, really hot.”
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Have you experienced a lupus flare or skin symptoms from sun exposure? How do you manage them? Share your experience in the comments below, or start a conversation by posting on your Activities page.