Stanislaus County Health Services Agency
Self Care May Prevent Lupus Flares

Lupus has the dubious distinction of being called “America’s least-known major disease.” The name lupus, Latin for wolf, comes from red marks on the skin that, according to the physician who named it, resemble bite marks of a wolf. An autoimmune disease that causes the immune system to attack and harm its own tissues, lupus has symptoms that range from mild skin rashes and flu-like aches to life-threatening kidney failure.

Women face a far greater risk of the disease than men. Of those diagnosed 90 percent are women, usually of childbearing age. Non-white women are more likely than whites to get lupus, with women of African descent at highest risk. The disease strikes 1 in 250 African-American women, compared to 1 in 1,000 white women.

Lupus develops when the immune system mistakenly identifies an invader. Antibodies are special cells which recognize and attack potentially harmful foreign organisms, such as bacteria, fungi, and viruses, within the body. In autoimmune diseases like lupus, defective antibodies recognize the body’s own tissues as foreign and turn against them. The result is an inflammation of the tissues, causing redness, swelling, elevated blood flow and tissue destruction.

Lupus patients typically go through periods in which they have few or no symptoms, alternating with flares when symptoms are more severe. Flares may be triggered by a number of factors, including stress, exposure to the sun or certain medications or foods.

These unpredictable changes make life particularly difficult; not knowing whether a flare will occur, a patient’s plans often remain tentative until the last minute. “With lupus,” recounts one 40-year-old woman, “things change so quickly. I would call the doctor and say this is what’s going on with me, and by the time I got there, that was not the problem anymore. And so you begin to wonder, ‘Am I really sick? What on earth is wrong with me?’”

Symptoms of the disease vary depending on the area of the body affected. Common symptoms include fever, fatigue, unexplained weight loss or hair loss, photosensitivity, decreased appetite and muscle pain. Characteristic of lupus is a red or brownish butterfly-shaped rash across the nose and cheeks. Disc-shaped rashes are also common, causing red, scaly bumps similar to chickenpox.

Symptoms affecting the kidneys are among the most threatening. About half of lupus patients contract a kidney disease at some point in their lives. When antibodies attack a foreign invader, they are assisted by complement proteins; the two join to destroy the invader, releasing debris from the battle into the bloodstream.

With autoimmune diseases like lupus, excess debris is produced, flooding the liver and spleen and settling in the kidneys, where it can inhibit blood flow and kill cells. Kidney failure and other life-threatening damage to the kidney can occur. Proteins or other abnormal substances in the urine are a sign of kidney damage.

Studies are currently underway to test whether infusions of complement inhibitors can play a role in slowing lupus.

Arthritis and other joint problems occur in about 90 percent of all lupus patients. Although it may be difficult, regular exercise is thought to be particularly beneficial to lupus patients. Says Dr. Rosalind Ramsey-Goldman, lead author of a National Institutes of Health study on the effects of exercise on lupus: “Exercise improves joint mobility, muscle strength and function, thus producing less pain. The lupus patients reported less fatigue and overall felt much better.”

Exercise also helps to minimize the negative effects of steroids and other medications often prescribed to treat lupus. Because lupus patients are often photosensitive, long-sleeved clothing, a hat and plenty of sunscreen are essential.

Lupus can affect the heart, lungs and circulatory system. Accumulation of fluid in the lungs (pleuritis) can result from inflammation of tissues in the chest cavity. Signs of fluid buildup include chronic coughing and shortness of breath.

Inflammation of the tissues around the heart, as well as the heart itself, can cause arrhythmia, heart failure and even sudden death. Blood clots often develop, and are a particularly common cause of complications in the second decade after diagnosis. Anemia and low counts of certain types of white blood cells are common in lupus patients, making blood tests a helpful tool in diagnosing the disease. Pale or purple fingers and toes may also be a sign of lupus.

The causes of lupus have long remained a mystery. Due to the disease’s prevalence among women, some believe it may be linked to female hormones or to the stress of pregnancy and childbirth. Many women acquire lupus during or shortly after a pregnancy.

Childbirth and other hardships unique to women may also account for the fact that women are five times as likely as men to die of lupus. Lupus-related deaths are three times as likely in blacks as in whites, possibly a result of lack of access to quality medical care in black communities.

Genetics are also thought to play a role. A 2001 study at the University of California, San Francisco found that although no single gene appeared to cause lupus, Caucasians with the disease who had a specific genetic variant were more than four times as likely to develop severe nephritis, or kidney complications. No such susceptibility was evident in non-white patients with the same genetic variant. Researchers expect to find further genetic links in future studies.

Treatment for lupus varies with the organ systems affected and the severity of the patient’s case. A substantial proportion of patients suffer from a mild form of lupus which requires little or no treatment.

Mild inflammation of joints can often be treated with nonsteroidal anti-inflammatory drugs such as ibuprofen and aspirin. Antimalarial medications are often prescribed for more severe joint problems and skin rashes.

Patients with potentially life-threatening cases may require stronger medication such as steroids, which can have serious side effects. Other medications specific to personal symptoms may be needed.

All lupus patients require regular evaluations; those with more severe symptoms should be treated by a specialist.

There are no known ways to avoid developing lupus. It may be possible, however, to prevent flares. To avoid a flare, patients should eat a healthy diet, exercise regularly, learn to manage stress, get enough sleep and avoid prolonged exposure to the sun.

Although there is currently no cure for lupus, new developments give hope for one in the not distant future. The Alliance for Lupus Research (ALR) recently received a 12 million dollar donation from Robert Wood Johnson IV after a family member of the New York Jets owner was struck with the disease. Johnson has committed to raising $50 million more in hope of finding a cure. The ALR, working in conjunction with the Arthritis Foundation, has set a goal of finding a cure within 10 years.

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