Summertime … and the livin’ with lupus is… not easy. With the intense sunlight, heat, humidity, wind, pollen and even air pollution, summer can make life miserable for those living with SLE.  Summer conditions can trigger flares and possibly even the disease itself.  To learn how to best manage this time of year, read on. 

• The 30-second Overview
• Sunlight and Photosensitivity
• Heat and Heat Intolerance
• Other Summertime Environmental Triggers: Wind, Pollution, Pollen
• Social Expectations and Emotional Health
• Final Thoughts …

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The 30-second Overview

Summer (the warmest time of the year) significantly increase the risks for many lupus symptoms that can lead to organ damage.  The environmental triggers of summer can cause both the activation of acute symptoms (like flares, pain, rashes, etc.) and the worsening of chronic conditions (like fatigue and kidney damage).

Some quick facts about lupus in the summer:

• Sunlight, specifically its UV radiation, is a very common issue for those with lupus photosensitivity.
• High temperatures can lead to many symptoms associated with lupus heat intolerance.
• Air pollution can increase disease activity for those with SLE.
• Wind (summer and winter) can lead to increases in neurological and lung-associated symptoms.
• Air pollution, which can be particularly unhealthy in the summer, is known to increase some lupus symptoms.
• Arthritis, as a common symptom of or even an overlapping condition with SLE, also increases in summer.
• Finally, as it turns out, renal flares are statistically less common is the summer.

There are some basic things that you can always do to help avoid the worst that summer can bring:

• Check in with your healthcare provider before the summer heats up.
• Maintain a healthy diet (hydrate!) and appropriate exercise.
• Stick to your treatment plan – even when travel and summer schedules/vacations can make that difficult.
• Be mindful and compassionate with yourself and others!

Now, let’s go deeper into the most important summertime triggers and what to do about them!

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Sunlight and Photosensitivity

One of the biggest challenges for individuals with lupus in the summertime is how the longer exposure to intense sunlight, can affect the heightened sensitivity to known as lupus photosensitivity. It is estimated that between 40% and 90% of lupus patients report experience photosensitivity at some point.

Ultraviolet (UV) radiation from the sun can activate the autoimmune response in lupus – triggering flares, which can lead to a range of symptoms, such as:

• Increased fatigue;
• Joint pain;
• Skin rashes, and
• Overall, systemic inflammation.

How to deal with sun sensitivity?  Be proactive!

• Wear protective clothing, made from UV-protective fabric,
• Wear wide brim hats, long-sleeved shirts, even gloves if necessary.
• Use broad-spectrum sunscreen that works against UVA and UVB.
• Try UV blocking sunglasses and film on windows can also help.
• Avoid medications and cosmetics that can increase sun sensitivity.
• Stay in the shade when outdoors, especially between 10 am and 4 pm.
• Taking antimalarials can also provide some relief from photosensitivity.

For more details on lupus and the sun, check out, “Lupus and Photosensitivity: When the Sun is Your Enemy.”

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Heat and Heat Intolerance

Lupus can take away a person’s ability to tolerate heat – causing hot flashes and excessive sweating.  Why this happens is not well understood.  One possibility may be in how lupus affects the small blood vessels of the skin – which in turn, affects how heat from inside the body is brought to the surface of the skin.

Interesting facts about heat and lupus:

• Research has found that those with lupus have abnormally high levels of nitric oxide – a natural “hormone” that dilates blood vessels, which creates a feeling of warmth and causes the skin to redden and sweat.
• Warmer temperatures also statistically increase the occurrence of:
  • Rashes;
  • Joint flares;
  • Serositis, the inflammation of the thin tissue around internal organs, and
  • Hematologic issues like anemia and low white blood cell counts.
• Some medications can cause hot flashes and overheating.
• Interestingly, humidity itself has rarely been shown to trigger lupus flares in research studies.

So, what can be done about heat intolerance? 

• Obviously, try to stay cool by using fans or air conditioning, and avoid long exposure to high temperatures, such as in a sunbaked car.
• Dress in light, breathable fabrics.
• Be careful to not overheat when exercising.
• Stay hydrated. This is physically cooling and will help you to sweat normally.

 Note: if a lupus patient has heart involvement or lupus nephritis, hydration can be a challenge because they need to limit fluid intake even when they need to hydrate!

For more detailed information about lupus and heat intolerance, check out our article, “Lupus and Overheating.”

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Other Summertime Environmental Triggers

 Wind:  Interestingly, it has been found that windy conditions can also trigger lupus flares.  While wind can happen any time of the year, the combination of wind and heat in the summer can be particularly triggering.  Wind has been found to cause spikes in:

• Hematologic problems, such as anemia;
• Lung involvement, and
• Neurological symptoms, like brain fog.

Air Pollution: Inhaling pollution, especially fine particulates from wildfire smoke and thick summer smog, have been associated with increases in:

• Rashes;
• Joint inflammation, and
• Serositis.

Allergens:  Pollen, insect bites and other summertime allergies can also trigger the hyperactivation of the immune systems that can lead to flares.  One study found that up to 55% of lupus patients reported active SLE when experiencing allergy symptoms.  What to do?  Try avoiding known allergens as much as possible, and ask your healthcare providers if medications, like corticosteroids or antihistamines, can help prevent a heightened autoimmune response.

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Social Expectations and Emotional Health

Summer brings with it a host of social expectations from family and friends to participate in outdoor activities, travel and holiday vacations.  The same hot and sunny weather that increases a person’s desire to be actively engaged, also frustratingly heightens psychological symptoms like fatigue and anxiety.  As a result, it is incredibly common for those living with lupus to feel socially isolated, which creates its own vicious cycle of depression and worsening symptoms that can feed on itself.

What can you do about the social and emotional stresses of summer? 

• First, listen to your body; observe your feelings of depression and anxiety as you notice them. Use meditation, journaling or other reflective activities to get in tune with your feelings and own them.
• Second, schedule your time and social activities realistically. This may take more planning and self-restraint than you usually need.  The popular Spoon Theory is an excellent way to think realistically about the energy you will need to get through each day.
• Third, learn to say “no” to family and friends when saying “yes” could lead to flares or worse. This can be very, very difficult, but it is an important step in taking control of your own health – emotionally as well as physically.
• Learn to communicate with family and friends about your feelings and personal boundaries. You cannot expect them to understand what you are going through unless you tell them … and in a way that does not judge them either!
• Practice “mindful self-compassion.” This is the non-judgmental mindset that allows you to say to yourself, “It’s okay to stay inside today. My loved ones would want me to make that choice … even if it also disappoints them.”
• Finally, join a support group, either in-person or online. These can provide a opportunity to get useful advice from others and receive encouragement from a supportive community!

For information on Kaleidoscope Fighting Lupus’ support group, email us at [email protected]!

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Final Thoughts …

Summer is a time when the weather and social expectations can put an extreme amount of stress on those living with SLE.  Yet, the more you understand your lupus and take responsibility to avoid the things that can trigger flares, the more likely you will stay healthy and get the most out of this incredible season!

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References

 Blaskievicz, P.H., Silva, A.M.C., Fernandes, V., Pinto, O.B., Shimoya-Bittencourt, W., Ferreira, S.M.B., & da Silva, C.A.L. (2020) Atmospheric pollution exposure increases disease activity of systemic lupus erythematosus. International Journal of Environmental Research and Public Health,17(6):1984. doi: 10.3390/ijerph17061984.

Duarte-García, A., Fang, H., To, C. H., Magder, L. S., & Petri, M. (2012). Seasonal variation in the activity of systemic lupus erythematosus. The Journal of Rheumatology, 39(7), 1392–1398. https://doi.org/10.3899/jrheum.111196

Geis, P., & McLennan, A. (2012) Everyday and high-UPF sun-protective clothing. The Melanoma Letter 30(2).  Retrieved from https://www.skincancer.org/publications/the-melanoma-letter/summer-2012-vol-30-no-2/clothing#panel1-1

Kim, A., & Chong, B. F. (2013). Photosensitivity in cutaneous lupus erythematosus. Photodermatology, photoimmunology & photomedicine, 29(1), 4–11. doi:10.1111/phpp.12018

 Sequeira, J.F., Cesic, D., Keser, G., Bukelica, M., Karanagnostis, S., Khamashta, M.A., & Hughes, G.R. (1993). Allergic disorders in systemic lupus erythematosus. Lupus, 2(3). 187-191. doi: 10.1177/096120339300200311.

Stojan, G., Curriero, F., Kvit, A., & Petri, M. (2019, November 10). Environmental and atmospheric factors in systemic lupus erythematosus: A regression analysis [Poster Session]. American College of Rheumatology Annual Meeting, Atlanta, GA. United States. https://acrabstracts.org/abstract/environmental-and-atmospheric-factors-in-systemic-lupus-erythematosus-a-regression-analysis/.

Wanchu, A., Khullar, M., Deodhar, S., Bambery, P. & Sud, A. (1998). Nitric oxide synthesis is increased in patients with systemic lupus erythematosus. Rheumatology International, 18, 41-43. https://doi.org/10.1007/s002960050055

Zhang, H.L., Xu, S.-C., Tang, D.-S., Liang, D., & Liu, H.-F. (2011). Seasonal distribution of active systemic lupus erythematosus and its correlation with meteorological factors. Clinics (Sao Paulo, Brazil), 66(6), 1009–1013. https://doi.org/10.1590/s1807-59322011000600015

Zhao, C.-N., Xu, Z., Wu, G.-C., Mao, Y.-M., Liu, L.-N.,  Wu, Q., Dan, Y.L., Tao, S.-S., Zhang, Q., Sam, N.B., Fan, Y.-G., Zou, Y.-F., Ye, D.-Q., & Pan. H.F. (2019). Emerging role of air pollution in autoimmune diseases. Autoimmunity Reviews,18(6). 607-614. https://doi.org/10.1016/j.autrev.2018.12.010.

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Author: Greg Dardis, MS

Professor Dardis was the Chair of the Science Department at Marylhurst University and is currently an Assistant Professor at Portland State University.  His focus has been human biology and physiology with an interest in  autoimmunity.  Professor Dardis is also a former President of the Board of Directors of Kaleidoscope Fighting Lupus.

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All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.