Medication isn’t enough to keep this disease at bay…

Lupus is a stubborn disease that most doctors treat with a variety of medications. If you’re lucky, the disease can be controlled with only an antimalarial drug. Other people with lupus need a “cocktail” of powerful medications.

What most people don’t realize: To control lupus, medication isn’t enough. Everyone with this disease needs to also manage the triggers that cause flare-ups and can lead to life-threatening complications. Avoiding triggers may allow lupus patients to take smaller doses of stronger immunosuppressant drugs (or even eliminate the need for them) and decrease the frequency and severity of lupus flares.

WHAT IS LUPUS?

About one and a half million Americans—mostly women—are affected with the autoimmune disease known as lupus. Now, an increasing number of people, including celebrities such as the singer Selena Gomez and TV personality Nick Cannon, are speaking out about their personal battles with the disease. With this condition, the body produces antibodies, for unknown reasons, that attack the joints, skin, lungs, kidneys and/or other parts of the body.

About half of lupus patients have a mild form that affects only the joints and the skin. Others have a high risk for organ damage. Systemic lupus erythematosus (SLE), the most serious form of the disease, can affect virtually every part of the body, including not only the skin and kidneys but also the heart, brain and blood vessels.

The signs of SLE differ from patient to patient. One person might have a skin rash but no joint pain. Someone else might have fatigue and pain but no rash. Others show early signs of heart or kidney disease. This variability makes SLE difficult to recognize—and to treat.

THE DANGER OF UV LIGHT

Even though most people with lupus do take the medication that’s prescribed for the disease, they could benefit even more by carefully managing one of the most powerful lupus triggers—ultra-violet (UV) light.

Exposure to UV radiation—both from sunlight and indoor lighting—hurts everyone with SLE. UV light causes chemical changes in skin cells that trigger an increase in immune activity and inflammation. In about 30% of lupus patients, UV exposure causes a red rash on exposed skin (photosensitive rash). A so-called “butterfly” rash (covering the bridge of the nose and cheeks) also commonly occurs during or after sun exposure. Those who don’t get a rash may still experience some organ damage.

Systemic lupus erythematosus (SLE)Even brief exposures to UV light can be dangerous. For example, with the help of her doctor, a woman who continued having symptoms even though she always applied sunscreen before going outdoors discovered that her symptoms were triggered by the light from a photocopy machine.

Best UV protection measures…

• Apply sunscreen lotion all day, every day. Use a water-resistant product with an SPF of 30 or higher—and make sure that it blocks both UVA and UVB radiation. Apply it every few hours.

Good products: Anthelios SX by La Roche-Posay and sunscreen brands that contain Helioplex.

Also helpful: Use Rit Sun Guard laundry treatment for your outer garments. It adds an invisible coating to clothing that blocks more than 96% of the sun’s harmful rays. The treatment lasts for up to 20 washings.

• Use sunscreen even when you’re indoors or driving. The sunlight that comes through windows can trigger symptoms. Driving with the car windows up decreases UV penetration in the car.

• Change the lightbulbs. Indoor lighting also emits UV radiation. Halogen lights emit the most UV light, followed by fluorescent, including both tubes and bulbs.

Best choice: UV-free LED lights, widely available at hardware stores and online.

• Don’t use the UV drying units after manicures or pedicures. Let the nail polish dry on its own. Or use a dryer that contains a fan but no light.

What also helps…

Avoiding ultraviolet (UV) light isn’t the only self-care step to follow if you have systemic lupus erythematosus (SLE). Three other important recommendations…

• Boost your vitamin D. Most people with SLE don’t produce enough of this important nutrient, in part because they avoid the sun. (Vitamin D is produced in the skin following sun exposure.) The optimal blood level for a person with lupus is around 40 ng/mL. If you’ve been diagnosed with SLE, your doctor probably orders blood tests four times a year. Be sure that he/she checks your vitamin D level each time, then prescribes an appropriate dose of vitamin D supplement, as needed.

• Get more omega-3s. Everyone with SLE should eat fish and other foods high in omega-3 fatty acids, such as flaxseed and walnuts. These healthful fats are thought to ease excessive immune activity and reduce inflammation in the body. Also: Studies suggest that food sources of omega-3s are more effective than supplements for this disease. If you’re not a fish lover, you can get more omega-3s by drinking protein shakes spiked with ground walnuts and flaxseed. One tablespoon daily of olive oil also has been found to have anti-inflammatory properties.

• Ask about DHEA. The naturally occurring hormone dehydroepiandrosterone (DHEA) is converted in the body into testosterone and estrogen. Many patients with SLE have levels that are lower than normal. Some patients who take DHEA may be able to reduce their doses of steroid medications—and thus reduce side effects, such as weight gain, diabetes, brittle bones, glaucoma and cataracts. Important: Take DHEA only under a doctor’s supervision, since it can raise risk for certain cancers in some people. Over-the-counter products can contain much lower amounts of the active ingredient than what’s listed on the label. Ask your doctor to write a prescription, and get it filled at a compounding pharmacy.