As the summer is in full swing, it’s important for people with lupus to pay close attention to sun exposure.
Why? Because lupus causes many people to become sensitive to light.
To learn more about how people with lupus can manage time in the sun, we spoke with an expert in cutaneous (skin) lupus – Jillian Richmond, PhD, Assistant Professor, Tufts University Cummings School of Veterinary Medicine.
Dr. Richmond has vast research experience in the field of autoimmune skin diseases. As an LRA-funded researcher, she is currently seeking to understand whether specific molecules on the surface of lupus-causing immune cells could be targeted to prevent or slow lupus disease progression in cutaneous lupus erythematosus (CLE).
Find out how you can stay safe in the sun – and how research is brightening the outlook for people with lupus.
As we dive in, can you explain the connection between lupus and sun exposure?
Sun exposure can cause lupus flares. We think this happens because a lupus patient’s genes make them more sensitive to the sun. This sensitivity happens for slightly different reasons in different people living with lupus. For example, some folks might have skin cells that are more easily damaged by the sun. Likely, most patients have a copy of a gene that makes their immune system overactive, and therefore, it overreacts when skin cells are damaged by the sun.
You might also be interested to know that some medications can make people more sensitive to the sun. In a condition called drug-induced cutaneous lupus, people who are taking medication for a different condition might develop a lupus skin rash. This typically goes away after stopping the medication and/or staying out of the sun, but in a small percentage of people, it can lead to full-blown lupus. This is a perfect example of how genes plus environmental exposures can cause chronic inflammation.
Why is this important to pay attention to?
It is important to pay attention to sun exposure and your lupus symptoms because skin flares can actually cause damage to other organs of your body. My friend and collaborator Dr. Sladjana Skopelja-Gardner showed in her research projects that skin damage from UV light can accelerate kidney disease in lupus mouse models. We think this happens because our kidneys filter our lymph and blood and are sensitive to excessive inflammation. In my own lab’s research, we recently discovered that each time a lupus flare occurs, white blood cells called T cells are formed and move around in our bodies, possibly explaining why cutaneous lupus can progress to systemic lupus if not treated properly.
Is photosensitivity an issue for people with systemic lupus erythematosus (SLE) as well as CLE?
Yes! Photosensitivity or sunlight sensitivity is an issue for people with SLE as well as CLE. We think that sub-clinical inflammation, or low-grade inflammation that is harder to see than a typical CLE rash, can also lead to lupus flares.
Clinician scientists like Dr. Victoria Werth and Dr. Michelle Kahlenberg continue to examine how sunlight affects patients with SLE, and I am excited to see the results of their new trials. My medical student Haya Raef wrote a nice science communication article about photosensitivity called “Can kids be allergic to the sun?” that you can read if you are interested in learning more about how the sun contributes to lupus and other conditions.
Can SLE or CLE be caused by sun exposure, or does it become an issue once the disease has already begun?
This is a chicken-or-egg question! It is hard to prove if sunlight was the environmental trigger of lupus, or if the underlying inflammation triggered the sun sensitivity, because lupus patients often must wait 5-7 years to receive a diagnosis. I have learned from my friends who are lupus warriors that they had weird symptoms that were unexplained for years before they finally understood that lupus was the missing piece of the puzzle. For example, one of my friends had pleurisy – fluid around her lungs and heart – that was unexplained for years before she got her diagnosis. Now she gets very tired if she goes out in the sun, though she does not develop a rash. In contrast, another friend would develop a rash across her forehead if she went out in the sun. This continued for years before she received her lupus diagnosis. I think that lupus could likely start in any mucosal organ, which includes skin, lung, or gut, and then spread to other organs. It really depends on each individual’s genetics and environmental triggers.
What tips do you recommend to lupus patients about minimizing the effects of the sun?
While I am not a physician and don’t treat patients, I actually have photosensitivity myself. Things that help me are wearing good sunscreen, wearing SPF/UPF clothing – especially shirts, and avoiding being outside during the strongest sun hours, which are typically 10am-3pm. If I need to be outside, I try to sit in the shade or bring a parasol/umbrella to sit under.
Can sitting indoors near a window or under fluorescent lights, as well as driving/riding in a car pose a problem?
Yes! While some glass is designed to block UV light, it typically does not block all light. Lupus patients can get prescriptions for window tints in their cars to reduce exposure to UV light. Fluorescent lights also emit some UV spectra, so it is important to wear sunscreen inside at work.
What should a person with lupus do if they are exposed to too much sun?
If you are exposed to too much sunlight, it is important to hydrate and take your lupus medications as directed by your doctor. If you have a flare, be sure to contact your doctor so they know and can help you manage your symptoms.
Is vitamin D deficiency an issue for people with lupus? What can help?
UV light tells our skin to make vitamin D, so if you avoid the sun, you can become vitamin D-deficient. Things that can help include taking vitamin D supplements and eating foods naturally rich in vitamin D, such as salmon. My medical student Dr. Janet Lubov wrote a helpful review of natural products that can help lupus patients, including vitamin D (though be sure to discuss with your doctor if you decide to try naturopathic or alternative medicine approaches, as these are also potent and can interfere with other medications).
How have these topics impacted your own research? Is there any additional research that you are encouraged by that explores why people with lupus are photosensitive and/or how it might be prevented?
One thing that I have become very interested in is how our skin senses sunlight! There are many cells in our skin that sense light and respond to it, to help with normal biological processes like circadian rhythm, or sleep/wake cycles. My postdoctoral fellow Dr. Saeed Shakiba and I are in the process of publishing a study of how Merkel cells, which are a type of sensory cell in the skin, help to mitigate inflammation. Mice that lack Merkel cells have worse inflammation in their skin!
As we head into the warm summer months, what’s one thing you would want people living with lupus – or their support systems – to keep in mind?
I would say to remember your spoons! Every person living with lupus or other chronic condition only has so many ‘spoons’ to hand out in a day before you run out. This was an analogy that I learned about from Dawn Gibson at Creaky Joints, which describes your energy and tasks that you need to do in a day. They are finite! So don’t overdo it this summer. If you are tired or hot, try your best to rest and listen to your body. Having people who support you, be they friends, family or neighbors, is also helpful. You can schedule alternative activities with folks who understand your photosensitivity. Shout out to the ladies of LupusChat, with whom I have had several conversations about photosensitivity and tips and tricks for navigating it. They are always there to listen and help fellow lupus warriors!
Tags: CLE, Jillian Richmond, sun management, sun safety, sunscreen, UV