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One of the most common skin conditions people with lupus experience is photosensitivity — skin rashes and other symptoms from sun exposure or ultraviolet light. More than 11,000 MyLupusTeam members report sun sensitivity as a symptom. Some estimates indicate that two-thirds of those with lupus deal with being photosensitive. Another estimate put it between 40 percent and 70 percent.
A few MyLupusTeam members reported no negative effects from the sun at all. “I have had lupus since 1994 and have never had a burn.” Most, however, seem to have a problem with sun exposure. A member who previously enjoyed going out in the sun said, “I'm just so sad because I love the sun.” Another reported a whole constellation of sun symptoms: “It makes me feel that my skin is burning: dizziness, extreme fatigue, and excessive sweating.”
There are three types of ultraviolet (UV) rays that make up sunlight: UVA, UVB, and UVC. 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. Both UVA and UVB rays are capable of causing skin damage in lupus, although UVB rays are more likely to do so.
When UV rays cause damage to exposed skin, the affected skin cells are normally removed by the immune system. However, when a person has lupus or some other autoimmune diseases, the immune system cannot clear out those cells as quickly. When those damaged cells stick around, the immune system fights them, prolonging the presence of any skin rash.
To make matters more complicated, this reaction can cause a lupus flare, leading to lupus symptoms like fatigue and joint pain. “The weather and sun makes my lupus flare up,” one member reported. “I have noticed the sun really drains my energy,” a second member said. “The biggest trigger of all is the heat and the sun,” a third member agreed. A fourth member said, “I get nauseous and weak, and my joints ache even when driving in the sun.”
Both cutaneous lupus erythematosus (CLE) and systemic lupus erythematosus (SLE) can be affected by sun exposure, although they may manifest themselves differently. SLE aggravated by sun exposure is associated with the classic “butterfly rash” across the cheeks that is considered diagnostic of the condition. CLE is usually associated with scaly red circles or disc-shaped lesions. Discoid scarring can occur with CLE and sun exposure as well. 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.”
Certain medications can make photosensitivity worse or cause it in individuals that normally do not have it. Non-steroidal anti-inflammatory drugs (NSAIDs), commonly used to treat the symptoms of lupus (such as joint pain and inflammation) are one of the classes of drugs that can cause this reaction. Some people who take Ibuprofen or Naproxen will develop a skin rash after sun exposure. This is more common for those who take Naproxen, although Ibuprofen users can also be affected this way.
Another commonly prescribed drug for lupus, Plaquenil (Hydroxychloroquine) is known for reducing the damaging effects of ultraviolet light. (Just taking Plaquenil alone should never be considered adequate sun protection.) Despite this, 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.”
It’s clearly not possible to avoid going out in sunlight altogether. There are several different ways to manage the sun when it can’t be avoided. Always wear sunscreen when going outside, preferably with a sun protection factor (SPF) of 70 or more.
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 a 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 a couple of hours with no issues,” said one member.
Sunscreen should be reapplied every two hours when you are in the sun, as well as after getting wet. Cloudy days don’t block most UV rays at all, so you should still wear sunscreen on those days. One member said their dermatologist actually steered them away from sunscreen: “My dermatologist told me to use zinc oxide only when out in the sun.”
If you know you are 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 sun off your face and large, wraparound sunglasses can protect the eyes. “Dark polarized sunglasses,” one member recommended. “I wear a hat and sunblock everyday,” another said.
One member found even the strictest measures didn’t always help. “Although I slathered on sunscreen, wore 3/4 sleeves, a wide-brimmed hat, and cropped pants and carried an umbrella, I still had sun exposure.”
Even with all these measures, it’s important to keep sun exposure to a minimum. “Wearing UV clothing, you still have to watch out how long you’re in the sun,” one member said. Keep track of how much time you spend in sunlight. 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 during the hours of 10 a.m. to 4 p.m. The sun’s rays are the strongest at that time.
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.”
Have you ever had a lupus flare related to sun exposure? Do you have any tips on sun protection for your team members? Comment below or start a new conversation on MyLupusTeam.