Hope for Lupus: Taming the Wolf
A lot of college students are epic snoozers, but for Lisa Amato of Unionville, Conn., the freshman year added up to a big "F" for fatigue and an "A" for achiness. "The extreme weakness and super-sore joints were like having the flu, only worse and never-ending," she says.
After a while, blood tests suggested lupus—a chronic autoimmune disease in which the body's immune cells turn traitor. They attack healthy cells in the skin, joints, muscles, brain, kidneys, and connective tissues all over the body.
For most people, lupus is a mild disease that strikes just a few organs. For others, it can cause serious, even life-threatening problems. The most common form, systemic lupus erythematosus (SLE), has widespread effects.
Getting a swift diagnosis hasn't always been easy, especially more than 20 years ago in Amato's coed days. Lupus can be as crafty as its name implies ("lupus" means "wolf" in Latin). One minute, symptoms can rage. The next, they slink off. They also vary widely from case to case. The most common include achy or swollen joints, muscle pain, fever, extreme fatigue, red rashes, and hair loss, according to the National Institute of Allergy and Infectious Diseases. Other common symptoms are chest pain with a deep breath, sensitivity to the sun, swollen glands, and mouth ulcers.
Lag time for diagnosis
No diagnostic test exists for lupus, and it may take months—or years—before a person is diagnosed.
Of the 16,000 new U.S. cases each year, most are likely to be in women. Women are 10 to 15 times more likely than men to get the disease. African American, Asian, and American Indian women face the highest risk. Doctors aren't sure why this is so, but female hormones may play a part. Genes also appear to be important, but so far, no "lupus gene" has been found. Instead, a combination of up to 20 different genetic factors may make a person more likely to develop lupus.
Although the exact cause of lupus is unknown, its unpredictable flare-ups—and, often, the medicine used to treat it—can cause havoc. Amato took huge doses of prednisone, the anti-inflammatory and immune-suppressing drug that is the "gold standard" treatment for lupus. The drug left her bones so fragile that a tight hug could break one. Other side effects of prednisone include weight gain, loss of muscle mass, cataracts, and high blood pressure.
Currently, lupus treatment involves one or more of the following medications:
Some of these treatments have few side effects, and others have severe side effects, the Lupus Foundation of America (LFA) says.
Other medications
These medications also are often prescribed to treat conditions that accompany lupus:
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Diuretics, to reduce fluid retention
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High blood pressure medication
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Medications for seizure disorders
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Antibiotics for infections
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Medications to prevent osteoporosis
Despite the downside of medications, "there is much reason to hope," says Duane Peters of the LFA. "For one thing, doctors are getting better at dosing prednisone to minimize side effects," he says.
For another, researchers are getting closer to understanding changes in genes that react strongly to triggers that cause SLE flare-ups, according to Joan T. Merrill, M.D., foundation medical director.
Several promising treatments are "in the pipeline," Dr. Merrill adds. These include modified hormones and more refined medications that block the immune system's attack on the body. One of these is the cancer medication rituximab, which selectively goes after B cells in the body. B cells are white blood cells that produce antibodies against viruses, bacteria, and other pathogens. A person with lupus has much lower-than-normal levels of B cells, but the B cells that do exist overreact or react inappropriately toward the body’s own tissues, says the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
Tips to keep lupus at bay
Here's how lupus patients can manage the disease and reduce flare-ups, says Gary S. Gilkeson, M.D., an immunology expert in Charleston, S.C.:
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Avoid the sun. Sunlight can send a lupus patient's immune system into hyperdrive. "Sunscreen is a must," Dr. Gilkeson says. But sunscreen also limits exposure to bone-building vitamin D, often lacking in people with lupus. Ask your doctor about taking vitamin D supplements, which can help you absorb the calcium you need to shore up your bones.
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Get regular exercise. "A half-hour of walking or some other aerobic activity three times a week helps reduce fatigue and boost energy," says Bonnie L. Bermas, M.D., a Boston rheumatologist.
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Learn stress management techniques. Biofeedback and muscle relaxation can fight fatigue and reduce pain, studies show. Support from family and friends also helps.
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Eat a low-fat diet. Some research suggests that switching to polyunsaturated fats may help, because this type of fat depresses the immune system.
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Stop smoking.
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Find ways to cope with flare-ups. Your "first aid" plan might include deep breathing and guided imagery to help you keep a sense of control and put a lid on stress.