Living with lupus

Faithia Robertson makes lists of what she needs to do each day. Although it may seem like she is simply trying to be organized, many times she can’t remember important things.

Her memory loss comes from having lupus, a chronic autoimmune inflammatory disease. Neurological problems are one of the effects of the illness.

“At one point, the disease must have been extremely active because I went home and I forgot how I got there,” the 34-year-old from Forest Heights says. “I’ve developed coping mechanisms. I depend on family and friends to remind me of things.”

About 1.5 million Americans have lupus, according to the Lupus Foundation of America in Northwest. The sickness, which has variations, causes a range of complications, where the immune system attacks the body’s tissues and organs, such as the joints, kidneys, heart, lungs, brain, blood or skin. It most often starts in women of childbearing years.

Since the Food and Drug Administration hasn’t approved a drug specifically for lupus in about 40 years, trials are under way to find more effective medication to treat the disease, says Dr. Bill Freimuth, vice president of clinical research for immunology, rheumatology and infectious diseases at Human Genome Sciences in Rockville.

Many of the drugs now used to treat lupus have been approved for other illnesses, he says. They include the steroid Prednisone, chemotherapy drugs, the anti-malaria medication Plaquenil, the arthritis medication methotrexate and organ transplant medication, such as CellCept and Imuran.

Dr. Freimuth’s research is currently focused on LymphoStat-B. This medicine is meant to reduce auto-reactive B cells and the auto-antibody B cells created in lupus patients, which cause the body to attack itself.

In a healthy immune system, the body protects itself from foreign substances. With an autoimmune disease, the immune system attacks the body.

“Lupus is viewed as the prototype of autoimmune diseases,” Dr. Freimuth says. “It has most of the components of all the other autoimmune diseases wrapped into one. If you can successfully treat it, then there is hope that you can treat the others.”

Trials for LymphoStat-B are taking place in 64 research sites in the United States and one in Canada. In July, 449 patients enrolled for the trial, which is designed to last one year. Miss Robertson is participating in the research through Dr. Arthur Weinstein, director of rheumatology at the Washington Hospital Center in Northwest.

The study, which is randomized and blind, plans for patients to either receive a placebo or three varying doses of the drug intravenously. After the trial is finished, patients may take part in an extension of the research by receiving the highest dose of the medicine.

“If we think a patient is doing poorly, we can change some of the other treatments,” Dr. Weinstein says. “Or we can drop them out of the study. There are patient safeties built into the study.”

While trials are under way for LymphoStat-B, research also is taking place concerning the environmental components that could cause the illness, says Dr. Mark Gourley, staff clinician at the National Institute of Environmental Health Sciences in Bethesda.

“If you have lupus and your twin sister doesn’t, there is something unique that you were exposed to when you were growing up,” he says. “We try to find twins, one that has the disease and one that doesn’t. They have the same genes, but may grow up in different environments. We dissect what makes them different.”

Further, no one knows what causes lupus, Dr. Gourley says. The genetic component of the disease is still being researched.

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