This sheet talks about the effects of lupus during pregnancy and while breastfeeding. This information should not take the place of medical care and advice from your healthcare provider.
What is lupus?
Lupus is formally known as systemic lupus erythematosus (SLE). It is an autoimmune disease that affects many different parts of the body. Autoimmune diseases occur when the body’s immune system attacks its own cells or organs. SLE affects women more than men. Most women are diagnosed in their 20’s or 30’s.
I have lupus and I am thinking of becoming pregnant. Is there anything I should know?
Women with lupus can have healthy pregnancies. However, women with lupus have a higher chance for complications during pregnancy. Healthcare providers believe that pregnancy outcome is better if the disease is well controlled for at least 6 months prior to becoming pregnant. If you are thinking about pregnancy, it is important to speak to your healthcare team before trying to get pregnant.
Will having lupus make it harder for me to get pregnant?
Unlikely. Lupus itself does not affect a woman’s ability to become pregnant. However, some women with high disease activity have reported missing periods, which might make it harder to get pregnant. In addition, some medications used to treat lupus can affect how your ovaries work, and this might make it harder to get pregnant. Women with kidney disease may also have a harder time getting pregnant.
How will pregnancy affect my symptoms?
It is not clear whether pregnancy increases the number of lupus flares or new symptoms of lupus. However, some studies have suggested a small increased chance for flares, with symptoms that ranged from very mild to severe. There were also some reports of flares within the first few months following delivery. The chance for symptom flares during pregnancy may be lower if lupus is not active within the six months prior to conception.
Does having lupus increase the chance for miscarriage?
Yes. While miscarriage can occur in any pregnancy, lupus appears to increase the chance of miscarriage in pregnancy. Miscarriage rates with lupus have been reported to be up to 35% during the first trimester. A previous miscarriage, kidney disease, and the presence of certain antibodies (such as antiphospholipid) have been associated with a higher chance of miscarriage in women with lupus.
Does having lupus in the first trimester increase the chance for birth defects?
In every pregnancy, a woman starts out with a 3-5% chance of having a baby with a birth defect. This is called her background risk. Having lupus in the first trimester has not been linked with a pattern of birth defects.
Would having lupus in the second or third trimester increase the chance for pregnancy complications?
Yes. Women with lupus have a higher chance of developing high blood pressure and preeclampsia. Preeclampsia is a pregnancy related condition that has several symptoms; some are a dangerous rise in blood pressure and reduced kidney function.
Women with lupus also appear to have a higher chance of late miscarriage, preterm delivery (delivery before week 37), and poor growth of the developing baby. In a small number of people, lupus can lead to blood clots, which can cause lung problems and possibly a stroke. Sometimes, blood clots can form in the placenta. These blood clots, in very rare circumstances, have led to the death of the mother or the developing baby.
Increased lupus activity, particularly during conception and early in pregnancy, increases the chance for these complications. Kidney disease and having high blood pressure before pregnancy can also increase the chance for these complications.
Does having lupus in pregnancy cause other problems or long-term problems for the baby?
Yes. Lupus in the mother can lead to symptoms of lupus in the baby. This is called neonatal lupus erythematosus (NLE). NLE is seen mostly in children whose mothers have certain antibodies (anti-Ro and/or anti-La) in their blood. Several of the signs of neonatal lupus (like a rash, blood abnormalities that only show up on a blood test and liver problems) are usually temporary and often disappear by age 6 months, sometimes sooner.
The most serious complication of neonatal lupus is a particular heart rhythm problem called congenital heart block. Congenital heart block can cause death in up to 30% of infants. While most babies born to women with lupus do not have heart block, your healthcare provider may do a special ultrasound of the baby’s heart called a fetal echocardiogram to look at the function and structure of the baby’s heart. This type of ultrasound is usually performed between 18-24 weeks of pregnancy to screen for congenital heart block.
I am taking medication for lupus. Can I take my medication during pregnancy?
Some medications used to treat lupus are not thought to increase pregnancy risks, while others might cause birth defects. For information on specific medications contact MotherToBaby and see our medication fact sheets at https://mothertobaby.org/fact-sheets-parent/.
Because having lupus is associated with a higher chance of pregnancy complications, it is important to keep the disease as inactive as possible. Stopping some lupus medications during pregnancy may lead to worsening of lupus symptoms, which could increase the chance of poor maternal and fetal health. It is important to discuss treatment options with your health care providers when planning pregnancy, or as soon as you learn that you are pregnant.
I would like to breastfeed my baby. Can I take my medications while breastfeeding?
Some medications are of low concern, while others may be of more concern. For information on specific agents see our medication fact sheets or contact MotherToBaby. Talk to your healthcare provider about all of your breastfeeding questions.
If a man has lupus, will this increase the chance for infertility or birth defects?
Studies have suggested that lupus and certain medications used to treat lupus might affect some men’s sperm, which may make it harder to get pregnant. In general, exposures that fathers have are unlikely to increase risks to a pregnancy. For more information, please see the MotherToBaby fact sheet Paternal Exposures at https://mothertobaby.org/fact-sheets/paternal-exposures-pregnancy/pdf/.
MotherToBaby is currently conducting a study looking at lupus and the medications used to treat lupus in pregnancy. If you would like to learn more, please call 1-877-311-8972 or sign up at https://mothertobaby.org/join-study.
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