Living with Lupus : Taking Care, Having a Baby

by Food and Drug Administration (FDA)

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Taking Care

Of course, avoiding all stress is impossible. But many lupus patients can manage to lead lives that are close to normal. "We tell the patient that lupus is now a very treatable disease," says Kray. But, Kray adds, successful treatment requires more from the doctor than just prescribing drugs and more from the patient than just taking them.

"First, patients should have a good relationship with the doctor — then they like coming back," says Kray. "Compliance is very important."

Richardson agrees that "confidence in your doctor is extremely important." But she doesn't leave her care completely in her doctor's hands. Richardson keeps what she calls a medical diary because "I'm finding that what I know can help out a lot. I probably know my body and my medications — what's worked and what hasn't — better than any one doctor I've ever had."

In addition to the medical treatments, lupus patients have to guard their health in other ways. "The things they tell you to do to survive with lupus are the things that most people ought to be doing anyway," says Richardson. "You need to get plenty of rest. You need to eat right. You need to just take care of yourself. The difference between me and someone who is 'healthy' is that they push themselves to the brink. I know that if I do that I won't just be nervous and tense; I might end up in the hospital."

Dori Stehlin is a member of FDA's public affairs staff. Andy Pflaum, a junior at the University of North Carolina, also contributed to this article during a summer internship at FDA.

Having a Baby

Roslyn Tavel wants another baby. But her one and only lupus flare-up occurred right after giving birth. According to Patricia Ann Fraser, M.D., a rheumatologist at Brigham and Women's Hospital in Boston, there is conflicting evidence about whether lupus symptoms will always flare during or immediately after pregnancy. She explains that in every lupus patient, pregnant or not, lupus symptoms and serious flare-ups come and go.

"I would really like to have another child," says Tavel. "My husband says if there's any risk involved at all it's not worth it. And I say that whenever you have a child there's a risk." Tavel says she's going to get the opinion of several doctors before she and her husband make any final decision.

Having a baby isn't automatically ruled out when a woman has lupus. "The medical attitudes towards pregnancy and lupus have really radically changed over the past 10 years," says NIH's Klippel. "Ten years ago I think that there was a rather strong sentiment that lupus patients should never become pregnant. Now, that certainly no longer applies."

For Tavel — and all lupus patients — the best chances for a successful pregnancy begin with careful planning.

"If somebody is anticipating pregnancy, the conception ought to occur at a time when lupus is either not active or only mildly active," says Klippel. Because kidney disease is one of the most serious symptoms of lupus, kidney function should be stable for at least six months before becoming pregnant.

Once a lupus patient becomes pregnant, her health care should be based on both her pregnancy and the lupus. While the usual practice during pregnancy is to avoid any drugs, that may not be possible for a patient with lupus.

The use of corticosteroids in pregnant lupus patients is similar to use in non-pregnant patients: The lowest dosage that controls disease should be used, according to Rosalind Ramsey-Goldman, M.D., an assistant professor of medicine at the University of Pittsburgh School of Medicine, writing in the journal Rheumatic Disease Clinics of North America, Vol. 14, No. 1.

Ramsey-Goldman adds that there are risks to the mother from the use of corticosteroids during pregnancy, but they are less than those associated with not treating the disease.

A hormone in the placenta protects the fetus from the side effects that the mother may experience with some steroids. In addition, some other steroids can actually benefit the fetus because they hasten lung maturity — important since many babies of lupus patients are premature.

The question of whether or not to take other drugs commonly prescribed for lupus is not as easily answered. In general, pregnant patients should not take nonsteroidal anti-inflammatory drugs, antimalarials, and cytotoxic drugs. However, during pregnancy "the medicines that are absolutely essential need to be continued," says Fraser.

It is very unlikely that a mother with lupus will give birth to a baby with lupus, according to Fraser. However, she says that lupus patients have higher rates of pregnancy loss — miscarriages and stillbirths — than the general population.

For patients who do not want to become pregnant, barrier contraceptives are considered to be the safest choice, according to Ramsey-Goldman. If oral contraceptives are necessary, she says, progesterone-only pills or combination pills with the lowest estrogen dose should be considered since higher amounts of estrogen have been shown to cause flare-ups in some patients. Sterilization is also an option "if a family is complete," says Ramsey-Goldman. Use of intrauterine devices is not recommended because of increased risk of infection.

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