- The Washington Times - Monday, November 22, 2004

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.

Lupus is characterized by inflammation, he says. Tissues and organs become red, hot, swollen and painful. For instance, inflammation could occur as arthritis, a butterfly rash across the cheeks and bridge of the nose, seizures or kidney disease.

The inflammation can lead to scarring, which can cause disability.

Other common symptoms of the disease are sensitivity to sunlight, oral ulcers and hematological disorders. Since each patient’s case of lupus varies in presentation, persons don’t need every symptom to be diagnosed with the disease.

In fact, there is not a single test that specifically diagnoses lupus, he says. However, the antinuclear antibody test (ANA) is used to screen for systemic lupus, in which 95 percent of people with the illness are positive. However, about 5 percent of healthy people report positive on the ANA test.

When a person has many lupus symptoms and the ANA test is positive, a diagnosis of lupus usually is made.

Kim Prach, 38, of Round Hill, Va., says her illness has been controlled by chemotherapy and steroids. Mrs. Prach is a working mother, with two small children, Cameron, 3 years old and Jamie, 18 months old, who was born with neonatal lupus, a variation of the disease.

Mrs. Prach also has experienced scleroderma, a chronic connective tissue disease, which often overlaps with lupus.

“I look normal to most people,” she says. “I walk slow on some days. I might limp a little bit. If you look at my hands, they might be blue. Sometimes, people have a hard time understanding that you’re sick when you look completely normal all the time.”

However, Mrs. Prach can tell the difference in her health. She used to run 25 miles a week, which she is now unable to do. Due to lupus, she has had problems with her lungs, lost motility in her esophagus and suffered with skin rashes.

“I can walk around the block with my kids, but that’s about all I can do,” she says. “It’s a combination of the lupus and the drugs I’m on for the lupus. It’s sort of like a roller coaster. It makes it hard to plan.”

Since the disease varies from patient to patient, it’s more complicated than many other illnesses, says Dr. Joan Merrill, medical director of the Lupus Foundation of America and the head of pharmacology at the Oklahoma Medical Research Foundation in Oklahoma City.

Many patients suffer for years without realizing they have lupus. Medical professionals often overlook the illness because it can masquerade as another disease.

“A lot of people diagnosed with lupus don’t have it,” she says. “Some people have it, and they don’t know it.”

THE 11 CRITERIA USED FOR THE DIAGNOSIS OF LUPUS

• URRENTLY, THERE IS NO SINGLE LABORATORY TEST THAT CAN DETERMINE WHETHER A PERSON HAS LUPUS OR NOT. A PERSON SHOULD HAVE FOUR OR MORE OF THESE SYMPTOMS TO SUSPECT LUPUS. THE SYMPTOMS DO NOT ALL HAVE TO OCCUR AT THE SAME TIME.

• Malar rash: Butterfly rash over the cheeks

• Discoid rash: Red raised patches on the skin

• Photosensitivity: Reaction to sunlight, resulting in the development of or increase in skin rash

• Oral ulcers: Ulcers in the nose or mouth, usually painless

• Arthritis: Nonerosive arthritis involving two or more peripheral joints, arthritis in which the bones around the joints do not become destroyed

• Serositis: Pleuritis or pericarditis, inflammation of the lining of the lung or heart

• Renal disorder: Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

• Neurologic disorder: Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

• Hematologic disorder: Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

• Antinuclear Antibody Test: Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

• Immunologic disorder: Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).

Source: The Lupus Foundation of America Inc. (www.lupus.org/ education/diagnosis.html)

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