Currently doctors advise women with lupus to avoid such medications as birth control pills and hormone replacement therapy (HRT)--both of which contain estrogen--because it is thought estrogen could do more harm than good.

The new study has already enrolled 50 women from clinics or private practices in Baltimore, New York City and Los Angeles, and will try to resolve the safety issues surrounding use of low-dose estrogen by women with lupus. The National Institute of Arthritis and Musculoskeletal and Skin Diseases and other components of the National Institutes of Health are funding the study.

"An initial 3-month trial did not detect any unusual side effects or toxicity, encouraging us to continue enrollment," says study co-director Dr. Michelle Petri of Johns Hopkins University's rheumatology division in Baltimore, Maryland. Dr. Jill Buyon of the Hospital for Joint Diseases in New York City is also a co-director of the study.

Doctors don't know what causes systemic lupus erythematosus (SLE, or lupus), but believe it results from a combination of genetic, environmental and hormonal factors. Lupus is called an autoimmune disease because the person's immune system produces antibodies that attack her or his own tissue. Because the disorder can affect many parts of the body--including the joints, skin, kidneys, lungs, heart, nervous system and blood vessels--lupus is called systemic. People with lupus experience times when symptoms are worse (flares) and times when symptoms ease or improve (remissions). Although men can develop lupus, 90 percent of those diagnosed with the disease are women and the disorder often strikes during childbearing years. Black women are three times more likely than white women to develop lupus. The fact that it can run in families suggests that genes are involved, but so far researchers have not been able to gather enough genetic evidence to prove the link.

To be eligible to participate in the study, women with lupus must have inactive, stable or moderate disease and must be taking only low-to-moderate doses of the steroid drug prednisone, a common lupus treatment. In one part of the study, postmenopausal women will take either HRT or an inactive pill for one year; in another part of the study, younger women will take either an oral contraceptive or an inactive pill for one year. Both studies will measure the rates and durations of flares in the women. Of particular interest will be women who have had the disorder a long time.

"Now that women with lupus live longer, it is essential that we know whether it is safe for them to use hormone replacement therapy," says Dr. Petri. "HRT may protect against heart disease and osteoporosis. Women with lupus, especially those taking prednisone, have a high risk of developing these diseases."

Interested in participating?
Contact

• Dr. Petri in Baltimore (410-955-3823),
• Dr. Jill Buyon in New York City (212-598-6522),
• Dr. Joan Merrill in New York City (212-523-6859),
• Dr. Lisa Sammaritano in New York City (212-606-1978),
• Dr. H. Michael Belmont in New York City (212-598-6279) or
• Dr. Ken Kalunian in Los Angeles (310-794-1776).
  --an NIH HEALTHWise report, November/December 1996

  
  For more information on this study, reporters can contact:

  Carla R. Garnett
  Writer and editor, NIH
  phone: 301-496-2125
  fax: 301-402-1485
  e-mail: cg9s@nih.gov
  

The signs of lupus differ from one person to another. Some people have just a few signs of the disease; others have more. Lupus may be hard to diagnose. It is often mistaken for other diseases. For this reason, lupus has often been called the "great imitator." Ninety percent of those with the disease are women. Black women are three times more likely to develop lupus than are white women.

Common Signs of Lupus Are:

• Red rash or color change on the face, often in the shape of a butterfly across the bridge of the nose and the cheeks
• Painful or swollen joints
• Unexplained fever
• Chest pain with breathing
• Unusual loss of hair
• Pale or purple fingers or toes from cold or stress
• Sensitivity to the sun
• Low blood count

These signs are more important when they occur together. Other signs of lupus can include mouth sores, unexplained "fits" or convulsions, hallucinations or depression, repeated miscarriages, and unexplained kidney problems.

For further information, contact:

Lupus Foundation of America, Inc.
1300 Picard Dr.
Suite 200
Rockville, Maryland 20850-3226
1-800-558-0121

The foundation can provide free pamphlets (available in English and Spanish) and newsletters. The foundation also can locate local chapters of the organization and can refer people to doctors and clinics who see a lot of lupus patients.

For general information on lupus, write to:

Lupus Information
Attention: HEALTHWise
National Institute of Arthritis and Musculoskeletal and Skin Diseases
1 AMS Circle
Bethesda, MD 20892-3675