By Jill Buyon, MD
Hospital for Special Surgery, New York, NY
Is it OK for women with lupus to become pregnant?
Most women with lupus do well during pregnancy, giving birth to full-term babies with no complications. It's best to be in remission for at least six months prior to getting pregnant. Although some physicians believe that lupus symptoms get worse during pregnancy, not all studies show this. Disease flares, even if they are more frequent, usually are mild. There are some risks, however, including premature birth and fast-developing high blood pressure (pre-eclampsia), so careful monitoring is key. In terms of lupus medicines, women should continue to take what they've been prescribed unless the doctor instructs them on specific changes.
Is the risk of miscarriage higher in women with lupus?
Women with lupus who test positive for antiphospholipid antibodies in their blood often are at increased risk for miscarriage, particularly in the second trimester. In some cases, especially if there have been previous miscarriages or blood clots, doctors recommend that a woman immediately start taking heparin or other blood thinners once she determines she is pregnant. This has been shown to notably increase the chances for a full-term birth.
Are babies of mothers with lupus healthy?
In most cases, the answer is yes. The babies have no greater chance of birth defect or mental retardation than do children born to women without lupus. Up to half of all lupus pregnancies result in premature birth of the infant, but most problems can be successfully treated and the baby usually does well in the end. Also, a small percentage—about 2 percent—of babies will have a condition called neonatal lupus. This consists of either a permanent heart blockage in which the heart beats abnormally slowly, or a rash that usually disappears by the time the baby is 6 months old. In about one in five cases, heart problems in babies with neonatal lupus cause death. Most babies do well, however, although they need a pacemaker for life.
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.
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.
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.