Systemic Lupus Erythematosus (Lupus) and Pregnancy

Because lupus often afflicts women during their reproductive years, it raises important questions: can I get pregnant with lupus, and will pregnancy affect my disease? The answers: yes, many women with lupus get pregnant. However, all pregnancies in women with lupus are considered high risk pregnancies - for the mother and the baby.

Just as lupus varies widely from one person to another, so does it vary widely during pregnancy. The only predictable effect of pregnancy on lupus is that it is unpredictable. In general:

• about one-third of women experience improvement in their lupus during pregnancy;
• about one-third of women experience worsening of their lupus - more flares - during pregnancy;
• about one-third of women experience no change in their lupus during pregnancy.

There are no reliable markers to predict who will do well or have problems. However, when problems occur, they are more likely in the first and second trimesters or in the first two months after giving birth. Women who have been in remission for more than six months before becoming pregnant seem to have a lower risk of flares during pregnancy.

In general:

• more than 50% of SLE pregnancies are completely normal;
• about 25% are complicated by issues, such as blood pressure problems or modest prematurity discussed below, that can be handled;
• about 25% have serious maternal or fetal problems to contend with, the worst of which is loss of the baby.

When the doctors and the prospective parents work together, the mother's own health is almost never at serious risk - although that is not the case if she does not stay in close touch with her doctor.

Kidney Risks

Women who have lupus nephritis have a small but significant risk of developing permanent kidney damage during pregnancy. Women who enter pregnancy with pre-existing kidney disease, depending on its severity, have a 25 to 50% likelihood of developing preeclampsia (a condition discussed in detail below). If this is promptly and aggressively treated, the risk to the mother is minimal; however, since immediate delivery is part of the treatment, the baby may be very premature. If preeclampsia is allowed to progress, the mother will suffer permanent kidney damage or worse. Therefore, women who already have mild to moderate kidney involvement should consider the risks of becoming pregnant in this light. Women who already have severe kidney disease should probably consider avoiding pregnancy because of this dangerous risk.

Miscarriage Risks

About 22% of women with lupus miscarry, usually in the first three months (first trimester) of pregnancy. Miscarriage is associated with a marker in the woman's blood called antiphospholipid antibody - a condition called antiphospholipid antibody syndrome. Antiphospholipid antibody is present in one-third of lupus patients. The specific cause of these miscarriages is unknown. It is possible that the antiphospholipid antibodies cause blood clots (thromboses) in the placenta that impair the growth of the baby. But not all women with the antibody miscarry - and not all miscarriages are associated with the antibody.

Miscarriage also may occur later in pregnancy, producing fetal death or stillbirth. Second trimester miscarriage is most often due to antiphospholipid antibody. Third trimester miscarriage is most often due to antiphospholipid antibody or pre-eclampsia.

However, with contemporary treatment, fetal survival is more than 80%, an encouraging figure compared to 85 to 90% fetal survival in women without lupus (i.e., 10-15% spontaneous miscarriage rate). Without treatment, the risk for fetal loss is much higher.)

Preeclampsia Risks

Preeclampsia is a very serious condition that may occur in the last three months of pregnancy (the third trimester). It involves:

• high blood pressure;
• fluid retention, leading to swelling of tissues including the feet, hands, face;
• loss of protein from the kidneys into the urine.

Women with lupus are at greater risk of preeclampsia. It can develop suddenly and rapidly and be dangerous to both the mother and the unborn baby if not diagnosed and treated quickly. Preeclampsia mostly occurs in women with kidney disease, women who are under 18 or over 35, women who smoke, women with fibroid tumors, and women carrying more than one child.

For the mother, untreated, preeclampsia can develop into:

• eclampsia, which are potentially fatal seizures; and
• HELLP syndrome (hemolysis, elevated liver enzymes, and low platelets) which is multi-organ dysfunction that can cause blood clotting problems.

For the unborn baby, preeclampsia may damage the placenta - the vital organ where nutrients from the mother pass to the growing baby.

• Because of the high blood pressure, the blood vessels that nourish the placenta may burst, causing the placenta to separate from the wall of the uterus (womb). That's called placental abruption. This can deprive the fetus of oxygen.
• Or blood clots may form in blood vessels leading to the placenta, again depriving the fetus of oxygen.

Fortunately, there is a cure for preeclampsia: delivery of the baby! This can be a difficult decision when preeclampsia occurs very early, although the earliest that preeclampsia occurs is 24 weeks. It can sometimes be hard to figure out whether symptoms are a lupus progression/flare or preeclampsia in those who already have kidney problems! So it's very important that a woman with lupus be monitored closely by a rheumatologist and an obstetrician experienced in dealing with lupus patients.

Symptoms of preeclampsia may include headaches, blurry vision, swelling of the face and eyes. Urine protein and blood pressure should be checked regularly.

Other Risks for the Mother

• Pre-term deliveries due to such factors as premature rupture of membranes - although premature babies are now very uncommon because more are being saved with the excellent neonatal care available today, this problem is more likely in women taking high dose prednisone;
• Postpartum hemorrhage - this severe maternal bleeding is very rare;
• Pulmonary hypertension - affecting the blood vessels of the lung is very rare.

Risks for the Baby

Your lupus can affect your baby not only during pregnancy but after birth.

Congenital heart block - Mothers pass their own antibodies-the good and the bad-on to their babies, so that the babies are protected from infection until they can make their own antibodies (3 to 6 months). Babies who receive the autoantibodies anti-SSA (Ro) and anti-SSB (La) from their mothers are at greater risk of congenital heart block, the most serious manifestation of the neonatal lupus syndrome. The autoantibodies accumulate in the baby's heart where they can cause thickening scarring of the heart muscle. The heat beats at a slower rate, which can even be detected before birth. Rarely, it leads to congestive heart failure before birth, in which case it is treated with corticosteroids or plasmapheresis (a form of blood "cleansing"). Most of the time, the problem is treated after birth. One-fourth to one-third of lupus patients have these autoantibodies. Babies of women who do not have anti-Ro or anti-La have no risk of having congenital heart block. The risk to babies of mothers who have both antibodies is under 3%, and they have an approximately 20% risk of developing other aspects of the neonatal lupus syndrome (see below).

Neonatal lupus syndrome - The newborn has a reddish skin rash that affects the face, head and upper body. This may occur on its own or in conjunction with congenital heart block (see above). Usually, neonatal lupus disappears without any treatment by the time the baby is one year old.

Thrombocytopenia - Rarely, when the mother's antibodies cross the placenta and reach the baby, the level of platelets in the baby's blood drops. (Platelets are important for normal blood clotting.) This condition is easily treated after delivery.

Planning a Pregnancy

Deciding to become pregnant - or whether to keep an unplanned pregnancy - is always an individual decision. But you should discuss all the risks vs. benefits in your personal situation with your doctor. For the best outcome:

• Get preconception counseling;
• Discuss you medications with your rheumatologist and obstetrician to decide if any should be stopped before or during pregnancy;
• Take prenatal vitamins;
• Try to achieve remission for at least 6 months before getting pregnant.

If you have repeated miscarriages, ask your doctor about taking low dose aspirin and/or heparin. These medications may be able to reduce your risk of further miscarriage if you have antiphospholipid syndrome.

If you have infertility problems, drugs for infertility do not appear to worsen lupus.

Medications during Pregnancy

Some medications often used in lupus treatment can continue to be used during pregnancy, while others can be hazardous to the baby. If one drug must be withdrawn to protect the baby, another safe one can be substituted during the pregnancy - and the drug regimen changed again after birth.

• Steroids, such as prednisone - considered safe for fetus during pregnancy. Pregnant mothers who have bone loss problems will need extra calcium; increases mother's risk of gestational diabetes.
• Anticoagulants, such as aspirin, heparin - considered safe for fetus in pregnancy; mother needs regular blood tests.
• NSAIDs (non-steroidal anti-inflammatory drugs), such as ibuprofen (Motrin), naproxen (Advil) and others - use with care, but not after 28th week of pregnancy, when it might be dangerous for the fetal heart.
• Immunosuppressants, such as azathioprine - should not be a first-choice treatment because some problems have been seen in animal studies but, if needed, can be used with care
• Antimalarials, such as hydroxychloroquine (Plaquenil) - should not be a first-choice treatment during the first trimester because of potential risks to the fetal eye.
• IvIg (intravenous immune globulin) - use is controversial.
• COX-2 inhibitors, such as rofecoxib (Vioxx) and celecoxib (Celebrex) - should be avoided because they are so new and effects are unclear.
• Thalidomide (Thalomid)- absolutely should not be used because it is known to cause birth defects.
• Cyclophosphomide (Cytoxan, Neosar) - absolutely should not be used because it is known to cause birth defects.
• Experimental medications, such as monoclonal antibodies and anti-DNA agents - should be avoided because their effect on the fetus is unknown.

Managing the Lupus Pregnancy

Close surveillance needed because of the increased risk of miscarriage and the possibility of growth restriction of the fetus.

• Ultrasound to check the anatomy, growth, and amniotic fluid volume.
• Antepartum fetal heart rate testing (NST-nonstress test) to check fetal well being and check for fetal distress and heart block.
• Fetal echocardiogram for those with detected heart block.
• Blood tests to screen for gestational diabetes, especially for those on steroids.
• Checking baseline kidney function with 24-hour urine collection.
• Monitoring for signs and symptoms of preeclampsia.
• Monitoring medication effects.

Although difficult and high risk, lupus patients can become pregnant, have successful pregnancies, with the advent of new therapies, we hope that someday all lupus pregnancies will be successful.

Sometimes when the stork just doesn't seem to be doing its job properly and the road seems long and hard, try to keep your focus on the goal - and with a little help - you can achieve a healthy pregnancy in the face of SLE.

More about HSS' SLE Workshop

posted 9/4/2003

Summary of a presentation given at The SLE Workshop, a free support and education group held monthly for people with lupus and their families/friends. Summary prepared by Diana Benzaia.