Get Into the Loop

Diagnosing, Treating, and Living with Lupus

By Gary Zagon, MD
Hospital for Joint Diseases, New York, NY

What is lupus?
Systemic lupus erythematosus (S.L.E.), commonly called lupus, is a chronic autoimmune disorder that can affect virtually any body organ. In lupus, the body's immune system, which normally functions to protect against foreign invaders, becomes hyperactive. It forms antibodies that attack normal tissues and organs such as the skin, joints, kidneys, brain, heart, lungs, and blood. The disease is characterized by periods of illness, called flares, and periods of wellness, called remission. About 70 percent of lupus cases are system-wide ("systemic") like this, with the remainder being limited to the skin (discoid or "cutaneous" lupus), or temporary (usually) due to the use of certain drugs.

What causes lupus?
Although they're learning a lot, researchers still don't know what causes lupus. Genes a person inherits likely set the stage, and factors in the environment then trigger the development of the disease. Suspected environmental triggers include extreme stress, hormones, infections, the use of certain drugs, and exposure to ultraviolet light. Lupus is not infectious; one person can't give it to another.

Who gets lupus?
Nearly 1.5 million Americans have lupus. While it occurs in both sexes, 90 percent are women, and most are diagnosed during the childbearing years. The disease discriminates in other ways as well. As many as one in every 250 African-Americans has lupus, according to the National Institutes of Health, which means a person of color is three times more likely to be affected than is a Caucasian individual. The disease also tends to be more severe in persons of color. In addition, Asian-American and Hispanic women have lupus at twice the rate that Caucasian women do, and Native American women are also disproportionately affected.

How is lupus diagnosed?
Because its symptoms come and go and can mimic those of other diseases, lupus can be difficult to diagnose. No single laboratory test proves that a person has this complex illness, and many people suffer from it for months or years without knowing what it really wrong. To make a formal diagnosis, doctors ask detailed questions about medical history and do a thorough physical examination. They also order both routine and certain specialized laboratory tests that can show immune system status and the body's level of inflammation.

What can be done to treat lupus?
While there is no cure for lupus, early diagnosis and appropriate treatment can help in managing symptoms and lessening the risk of permanent damage to organs or tissues. Once a lupus diagnosis is established, an assessment is made of damage to major organs. Treatment strategies are chosen depending on the activity level and extent of the disease. They can range from mild over-the-counter pain relievers and anti-inflammatory drugs or stress-relief strategies to powerful prescription medicines, psychotherapy, strict sun avoidance, and healthy diet changes. In addition to lessening inflammation and helping the body to work as normally as possible, many of these approaches can make a dramatic difference in how a person with lupus feels from day to day.

What medications are commonly used to treat lupus?
Many people with lupus at some point take prescription corticosteroids, anti-malaria drugs, or other medications that suppress the immune system. These are all powerful medicines that can dramatically improve lupus and even protect organs during a flare, but they also have notable side effects and aren't prescribed without careful consideration of the risks and benefits. With the latest research there is hope that the FDA will soon increase (from three; aspirin, prednisone, Plaquenil) the number of drugs approved for lupus, and that many will more specifically target the affected body part. Many people with lupus also take over-the-counter nonsteroidal anti-inflammatory drugs (NSAIDs) and acetaminophen, which don't fix problems but can make a dramatic difference in lessening stiffness, joint pain, and easing other discomforts.

Are companies developing new drugs to treat lupus?
Yes, finally. Several pharmaceutical companies are developing new medications. An online search will generate information on these companies and their drugs. You also can find websites that report new drug findings, such as www.LupusNY.org and www.LupusResearchInstitute.org.

What is it like to live with lupus?
A life with lupus is often full of uncertainty. Will the disease flare—and when? Does it interfere with having a family or regular job? Enjoying exercise and a social life? The bottom line is that everyone has a different disease course, and needs to find their way of coping with chronic illness. Meeting with other people who have lupus in the form of a support group often helps, but isn't for everyone. Some choose to share their story of disease and difficulty, while others aim to keep the information private and live as normal an existence as possible. Many books and websites offer tips and strategies for living with the disease. Whatever approach is chosen, it's absolutely vital to stay vigilant about regular checkups and blood tests.

What are the primary areas of research in lupus?
With no major new treatment approved in more than 40 years, lupus needs a breakthrough. Researchers have made significant headway over the past few years, reporting new findings on how and why the disease develops and what can be done about it. Among the advances are a deeper understanding of how the disease is sometimes passed on through generations and better understanding of how lupus attacks the brain, heart, kidneys, and skin.

How can I help advance research and drug development?
As a person with lupus, you can directly help in advancing lupus science—and at the same time help yourself—by participating in a research project called a clinical trial. These trials evaluate the safety and effectiveness of medical treatments, drugs, or devices in human beings. The Food and Drug Administration (FDA) requires that such trials be performed before a product is prescribed to patients. Try visiting the following websites: www.clinicaltrials.gov; www.LupusResearchInstitute.com; www.centerwatch.com.

What is the outlook for people with lupus?
There isn't a cure yet, but every year researchers get better insights into lupus and come closer to uncovering more specific and less toxic treatments. In 1955, only 50 percent of people newly diagnosed with lupus were expected to live more than four years. By 1969, that figure for 50 percent survival extended past four years to10 years. Now most people with lupus can look forward to a normal lifespan.

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