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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
February 11
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A MyLupusTeam Member

Hello there. For me, too much sun exposure causes the worst joint/muscle pain. Sometimes in one area (like clicking wrists or knees) or all over making chronic fatigue worse than it already is. Also itching. I've had to adjust and modify how I enjoy nature. I love gardening but have to dress fully covered from head to toe or garden in the early evening. Plaquenil also causes sensitivity to the sun which is such a lousy side effect. Wear Sunblock or sunscreen daily.

February 12
A MyLupusTeam Member

For me sun exposure makes me feel very sick like even within just a 5-10 minutes of being in the sun. I also burn much easier now than I ever used to burn. On top of lupus causing sun sensitivity, the medication Plaquenil, also causes that so it's a double wammy for us.

February 12
MyLupusTeam

Why are you told to avoid the sun with your SLE diagnosis?

UV light exposure can trigger photosensitivity reactions in people with lupus. This means your immune system can overreact to UV rays, causing various symptoms beyond just sunburn.

Sun exposure can lead to
* The classic butterfly rash across your face
* Various types Show Full Answer

Why are you told to avoid the sun with your SLE diagnosis?

UV light exposure can trigger photosensitivity reactions in people with lupus. This means your immune system can overreact to UV rays, causing various symptoms beyond just sunburn.

Sun exposure can lead to:
* The classic butterfly rash across your face
* Various types of rashes (not always limited to the exposed area)
* Itching or hives
* Skin sensations like pain, tingling, or burning
* Hair loss
* Skin discoloration and scarring

Beyond skin symptoms, sun exposure can trigger a lupus flare, worsening symptoms throughout your body like fatigue and joint pain. A MyLupusTeam member shared: "The weather and sun make my lupus flare up."

About 72% of people with SLE report sensitivity to light, so you're not alone in dealing with this challenge. How careful do you need to be?

You'll need to take sun protection seriously, but you can still enjoy outdoor activities with proper precautions:

* Apply sunscreen daily with at least SPF 70 (some find SPF 100 works better) that blocks both UVA and UVB rays
* Reapply every two hours and after getting wet
* Wear sun-protective clothing, wide-brimmed hats, and sunglasses
* Avoid outdoor time between 10 a.m. and 4 p.m. when sun is strongest
* Use umbrellas for extra shade
* Consider tinting car windows if you drive during daylight hours

Even on cloudy days, wear sunscreen since clouds don't block most UV rays. Track your sun exposure time and watch for any symptoms.

Some members find creative solutions helpful, like cooling rags soaked in cold water or carrying portable fans. The key is finding what protection level works for your body while still allowing you to live your life.

February 11

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