Tips for managing sensitivity to light

Most people with lupus have what’s called photosensitivity. That means you are sensitive to ultraviolet (UV) rays from sunlight and some types of indoor lighting. It’s important to understand how UV rays can affect people with lupus — and what steps you can take to protect yourself.

What is photosensitivity?

Photosensitivity causes people to be sensitive to UV rays from the sun or certain sources of indoor lighting — like fluorescent or halogen bulbs. Although anyone can have skin damage from UV rays, people with photosensitivity have stronger reactions.  

How can photosensitivity affect my lupus symptoms?

If you have photosensitivity from lupus, it can cause new skin rashes and sores (lesions) — or make existing skin problems worse.

Too much contact with UV rays can also trigger other lupus symptoms, like:

• Joint pain
• Fatigue (feeling tired)
• Fever
• Flu-like symptoms 
• Skin tingling or numbness
• Distant organ inflammation (like lupus nephritis)

Why do people with lupus have photosensitivity?

UV rays can damage cells in anyone’s body. Normally, the immune system (the part of the body that fights off bacteria and viruses to help us stay healthy) clears out these damaged cells. But if you have lupus, your immune system doesn’t clear out the dead cells — and it attacks healthy cells instead. These attacks can lead to photosensitive lupus rashes and increase inflammation throughout the body.

How can I protect myself from UV rays?

Here are some ways to protect yourself from UV rays — both outdoors and indoors.

Use sunscreen

Apply sunscreen every day, even if you do not go outside. Try these tips:

• Choose broad-spectrum sunscreen that’s at least 70+ SPF and blocks UVA and UVB rays
  • If you do not tolerate an SPF of 70, use the highest number SPF you can tolerate
• Apply sunscreen first thing in the morning, 30 minutes before heading outdoors
• Put on more sunscreen every 2 hours when outdoors, every 4-6 hours indoors
• If you’re swimming or sweating, put on more sunscreen often and ensure it is water resistant
• Remember to put sunscreen on all exposed skin areas like the neck, forehead, ears, upper chest, arms and hands

Most people do not use enough sunscreen. A rule of thumb is to use at least a “shot glass” amount for chemical sunscreens (you can use smaller amounts of mineral-based sunscreens). Another method is to add sunscreen to your index and middle finger, from base knuckle joint to tip, before applying to the face.

Cover up

Cover as much of your skin as possible with clothing that protects you from UV rays. Be sure to:

• Choose tightly woven clothing — and keep in mind that dark or bright colors usually offer better protection than light colors
• Improve the SPF of clothing by using laundry additives or detergents that can add UV protection
• Wear sunglasses with large, wrap-around frames that block 100 percent of both UVA and UVB rays
• Wear wide-brimmed hats or hats with neck protection

Protect yourself outdoors

• Avoid direct sunlight from 10 a.m. to 4 p.m. during daylight saving, or 9 a.m. to 3 p.m. standard time (when sunlight is at its strongest)
• Sitting on the beach under an umbrella or in the shade on a boat deck are not as safe as they sound. UV light is reflected off water, sand, snow and concrete.
• Wear sunscreen even in winter and during cloudy weather. Damaging UV light from the sun still occurs; it is just not as strong as on a sunny summer day.

Protect yourself indoors

You can also take steps to block UV rays when you’re indoors and on the road. Try these tips:

• Cover windows with UV-blocking shades at home and in your car — check your state laws for car window tinting guidelines
• Drive with the window ups, not down as they have some UV protection
• Replace bulbs with LED bulbs because they do not emit UV light
• Cover halogen and fluorescent light bulbs with light shields or UV filters
• Use fewer lights and turn them off when you can
• Do not allow UV drying lamps when getting your nails done. If you decide to continue to get your nails done, wear anti-UV nail gloves with sunscreen or opt for polishes that do not use UV drying lamps (like dip powder or regular nail polish)

Check your medicines

Some medicines can make photosensitivity worse. Talk with your doctor or pharmacist if you’re taking:

• Antibiotics — for example, sulfonamides (like Bactrim®), levofloxacin, anti-inflammatory drugs — for example, ibuprofen (like Advil® or Motrin®)
• Blood pressure medicine — for example, hydrochlorothiazide (like Maxzide®) and lisinopril (like Prinivil®)
• Tricyclic antidepressants — for example, amitriptyline
• Medicines used to treat lupus — for example, methotrexate (like Rheumatrex, Otrexup, or Rasuvo®)