Life with Lupus: One Day at a Time
by Phyllis Edgerly Ring
"Lupus" means "wolf" – fitting for a disease that often appears disguised as something else.
"Know lupus and you know medicine," says rheumatologist Daniel Wallace, MD, author of The Lupus Book. It affects every part of the body and can present as anything -- from a brain tumor to a rash. Wallace calls it the "great mimicker."
Of the estimated 500,00 Americans with lupus, 90 percent are women, most between the ages of 15 and 45 -- and up to four times as many are African American (1 in every 250 black adult females).
No one knows why Systemic Lupus Erythematosus causes the body’s autoimmune system to attack healthy cells. Research supported by the National Institutes of Health is studying the role of genetics and environment to determine why people of color are more likely to get it, what causes it, why its severity varies so widely, and why its signs may differ in black women.
No two sufferers exhibit identical symptoms, making diagnosis difficult and time-consuming. Fatigue is a frequent complaint, with fever and weight loss occurring in more than 60 percent of patients. The American College of Rheumatology requires that at least 4 of the following symptoms be present to confirm a diagnosis:
- malar (butterfly-shaped) rash across the face;
- discoid rash – raised, scaly rash on body;
- sun sensitivity;
- ulcers in mouth or nose;
- inflammation of joints;
- inflammation of lining of lungs or heart with resulting chest pain;
- kidney disorder – protein or blood in urine or kidney failure;
- nervous system disorder, such as seizures; psychosis, strokes;
- blood system disorder, such as hemolytic anemia;
- immune disorder, such as presence of LE cell containing two nuclei rather than one and a false positive reaction to the test for syphilis; and
- a positive ANA test, signifying the body’s production of antinuclear antibodies, which work against cell nuclei.
Whatever their symptoms, all affected must cope with lupus’ unpredictable nature.
"Living with an illness that can have you on your deathbed one day and running and playing with the dog the next CAN work on a girl's nerves," says Cheryl Washington, 37, of Mobile, Alabama. Diagnosed in 1992, this newspaper editor experienced three years of remission but has also struggled with life-threatening lung involvement and nephritis (kidney disease) as well as the debilitating joint pain that led to her diagnosis during a routine physical.
Research conducted by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) in collaboration with several medical centers identified a gene associated with increased risk for African Americans of lupus-related kidney disease like Washington’s. Variations in this gene affect immune cells’ ability to rid the body of harmful substances, so she currently receives chemotherapy to treat this.
Rheumatologist Robert Lahita, MD, author of Lupus: Everything You Need To Know, says lupus can be triggered in susceptible people by sun exposure that causes a sudden rash, or a cold or infection that develops complications. Sometimes prescription drugs produce symptoms, while some women first show signs during pregnancy, or soon after delivery. Although it’s unclear why female sufferers predominate, new research suggests that sex organs and hormones may play a role, Lahita says.
Most people with lupus can lead normal, active lives if they learn to recognize signs of "flares" – intensifying of symptoms – that characterize the disease. The goal is to control these and develop a regimen that suppresses symptoms. Regular laboratory tests can detect whether the disease is becoming active even before symptoms flare, and catching flares early reduces their impact, and the medication needed to treat them.
Sufferers minimize the risk of flares by avoiding excessive sun exposure, applying sun screen, exercising to prevent muscle weakness, and getting immunized against infectious illnesses.
They also learn to avoid stress, a major trigger of flares.
"Nine years with this disease has taught me to listen to and respect my body. When I'm tired, I rest.… Now I do most of my shopping online," says Washington. "I avoid negative people. I don't waste my time worrying about things that are not within my power to change. And I rely on God."
Treatment depends on individual symptoms, which organs are affected, and the severity of involvement. Most with lupus find that treatment minimizes symptoms and helps maintain normal body functions.
Commonly prescribed medications include NSAIDS (non-steroidal anti-inflammatory drugs) such as ibuprofen for joint pain and fever; Corticosteroids like Prednisone to reduce inflammation and suppress immune-system activity; Antimalarial drugs such as Plaquenil to alleviate skin and joint symptoms; Anticoagulants, to prevent blood clots; and Immunosuppressants such as Cytoxan, to block production of some immune cells in patients with kidney and central-nervous-system lupus.
Washington says sufferers tend to take a life a day at time, and become knowledgeable about this disease that requires excellent communication between a woman and her doctor.
"I've researched treatments, alternatives, medications, and side effects on my own because I've sometimes felt that doctors weren't being as forthcoming with information as they could have been," she says. "One doctor, a man I had trusted with my medical care for two years, pretty much told me nothing was wrong with me -- as he held a specimen of my bloody urine in his hand."
"I don’t know whether my skin color has anything to do with it or not. Friends with lupus tell me similar stories, and they're not African American. It has been my experience that having an autoimmune disorder automatically makes you suspect in the medical community." Doctors may fail to take the illness seriously and tell women "it's all in your head," Washington says. "I ran out of there and kept running until I found someone who'd listen to me and take my symptoms seriously."
Stephen Balch, M.D., F.A.C.P., medical director of the Jacquelyn McClure Lupus Treatment Center, notes that those who manage lupus well "focus on their current talents and abilities." They take responsibility for their health, understand their options, recognize lupus is not their whole life, and reach outside themselves to help others.
"Lupus has helped me focus more on the important and meaningful things: family, friends and love," Washington says. "Once I decided that I was not going to let this disease take over my life, I was free to be me again."
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