If you have lupus, you might be photosensitive – meaning you have an unusually strong reaction to sunlight.  In fact, about two-thirds of the people with lupus are UV light-sensitive.  Many experience an increase in lupus symptoms after being exposed to ultraviolet (UV) rays, either from the sun or from artificial light.

• Are you photosensitive?
• What are some symptoms of photosensitivity?
• Lupus and Photosensitivity: What can I do to protect myself?

Are you photosensitive? 

Ask yourself the following questions: Do you feel like the sun is your enemy? Have you noticed that you have flares or feel less than fantastic during warmer sunnier months or with increased sun exposure? Do you get rashes or irritated skin after exposure to the sun? Are you sensitive to fluorescent lighting? Have you been diagnosed with lupus?

If you answered YES to any of these questions, you are most likely photosensitive.

What are some of the symptoms of photosensitivity?

Here are some of the symptoms that you might experience with photosensitive:

1. Rashes may develop across the nose and cheeks after sun exposure; this is known as the butterfly rash, commonly afflicting those with lupus. Other rashes may look like hives.
2. Sun exposure may actually cause a lupus flare, resulting in fever, joint pain, and more serious organ inflammation. Practicing sun safety means being “sun smart.”
3. Photosensitivity can be confirmed by photo-tests. Artificial light from varied sources is shone on small areas of the skin to see if the rash can be reproduced or if a sunburn occurs more easily than expected.
4. Just as each person living with lupus can experience a host of symptoms at many different levels, each person can also experience photosensitivity to different degrees.  Some may have severe photosensitivity while others may have none.  Pay attention to how your own body reacts to UV exposure. We encourage you to make notes and discuss the results with your medical caregiver.

Lupus and Photosensitivity: What can I do to protect myself?

When the weather is nice and the weekend has arrived, the outdoors tends to call to us (as long as we are feeling well enough), right? Summertime or sunny time means barbecues, beach trips, picnics, hikes, bike rides, lounging in the backyard, gardening, etc. We want to spend time with our family and friends doing fun things and not feel left out, but being photosensitive may make us rethink our decision to join in outdoor activities. For those who have photosensitivity and live in a year-round sunny climate, this may be a 365 day dilemma. Does having photosensitivity mean that you cannot do these things at all? Of course not. There are ways to be smart about your sun exposure by practicing sun safety.

The facts are clear; regardless of whether you are photosensitive or not, research shows that too much UV radiation can cause sunburns which can lead to skin cancer, some of which can be deadly.  These UV rays can also damage your skin, causing wrinkles and premature aging. If you are photosensitive, these are real concerns in addition to the flares and rashes.

The best rule is to avoid midday sun between 10am and 4pm. Even if the day is overcast, those powerful UV rays are not all filtered out by cloud cover.  It is actually possible to get a sunburn on a cloudy day.

Wear sunscreen with at least an SPF (Sun Protection Factor) 30 that blocks both UVA and UVB rays. When applying sunscreen, be generous and re-apply often.  An 8-ounce bottle of sunscreen is enough for only eight applications to cover your entire body.  I mention your entire body, because all skin, not just skin directly exposed to the sun needs to be protected by sunscreen.   It may seem like over-kill, but apply sunscreen over your entire skin surface, as clothing does not offer the skin protection that you might think it does.  According to dermatologist, Dr. Debra Jaliman, M.D., “most fabrics let small amounts of sunlight pass through, especially fabrics that are loosely woven such as a light weight cotton t-shirt.”  When you are outside and in the sun for long periods of time, consider protecting yourself with clothing that is rated to UPF 50+, as it “allows just 1/50th of the sun’s UV radiation to reach the skin” according to the Skin Cancer Foundation.

It is also important to be conscious of the time you spend in the sun.  There are even apps for your smart phone, such as Healthy Sun – Safe Tan, that allow you to choose your skin type, sunscreen SPF and provides a count-down timer  for sun exposure that alerts you how long you have been outside.  This is not to encourage you to sun tan, but a dedicated timer feature can be quite helpful.

Believe it or not, indoor lighting can also be a source of UV radiation.  According to LupusUK, fluorescent bulbs and tubes can emit unsafe levels of ultraviolet light for photosensitive individuals.  The older incandescent bulbs are generally safe, though high wattage bulbs may need to be avoided by those who are very photosensitive.  Finally, LEDs emit no UV radiation, but if they are in the color spectrum of “cool white” or “bright white,” they may emit enough short-wavelength (blue) light, and they can be an issue for those who are extremely photosensitive.  The warmer and more yellow the light, the less likely it is to trigger photosensitivity.

Finally, your medications can exacerbate photosensitivity.  If you have any questions, ask your pharmacist or healthcare provider.

We hope this has been helpful information in providing you with a guide to photosensitivity and lupus. It is still possible to enjoy the warm summer months, but if you are photosensitive, you need to be sun smart! In truth, everyone can learn to keep safe while still living a life in the sun, not just those suffering from lupus.

References

Guide to artificial lighting (n.d.) Retrieved from https://www.lupusuk.org.uk/eclipse;a-guide-to-artificial-lighting/

Kristen, F., Chang, A.Y., Piette, E. W, Cucchiara, A., Okawa, J., & Werth, V. P. (2013). Characterization of clinical photosensitivity in cutaneous lupus erythematosus. Journal of the American Academy of Dermatology 69(2). 205-213.

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

Lupus sensitive and UV Light (2018). Retrieved from https://www.webmd.com/lupus/lupus-photosensitivity-uv#1

Millard, T.P., Kondeatis, E., Vaughan, R.W., Lewis, C.M., Khamashta, M.A., Hughes, G.R., … McGregor, J.M. (2001). Polymorphic light eruption and the HLA DRB1*0301 extended haplotype are independent risk factors for cutaneous lupus erythematosus. Lupus,10(7), 473–479.

Miller, K. (2018). Should you wear sunscreen under your clothes? A dermatologist weighs in. Retrieved from https://www.romper.com/p/should-you-wear-sunscreen-under-your-clothes-a-dermatologist-weighs-in-9634670

 

Author: Kaleidoscope Fighting Lupus Team

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