This sheet is about having lupus in pregnancy and while breastfeeding. This information is based on available published literature. It should not take the place of medical care and advice from your healthcare provider.
What is lupus?
Lupus, also known as systemic lupus erythematosus (SLE), is an autoimmune disease where the body’s immune system attacks its own cells or organs. Lupus can cause problems with the skin, kidneys, joints, heart, lungs, blood vessels, and nervous system. Symptoms can be mild to severe, and they can come (referred to as high disease activity or a flare) and go (called remission).
I have lupus and I would like to get pregnant. What should I talk about with my healthcare providers?
Women with lupus can have a healthy pregnancy. However, those with lupus have a higher chance of complications during pregnancy including a higher risk for nephropathy (kidney disease), thrombocytopenia (low blood cell counts), thrombosis (blood clotting), and neurological issues like headaches, seizures, and mood disorders. It is not clear if pregnancy increases the number of lupus flares or new symptoms of lupus, but disease activity might increase right after delivery (postpartum).
The chance for symptom flares during pregnancy and pregnancy complications might be lower if lupus is in remission for at least 6 months before getting pregnant. It is important to speak with your healthcare providers before trying to get pregnant or as soon as you know you are pregnant. They can work with you to come up with the treatment plan that is best for you.
I take medication for lupus. Can I take my medication during pregnancy?
Sometimes when women find out they are pregnant, they think about changing how they take their medication, or stopping their medication altogether. However, it is important to talk with your healthcare providers before making any changes to how you take your medication. Having lupus can cause pregnancy complications, so it is important to keep your condition controlled as much as possible. Stopping some lupus medications during pregnancy might cause lupus symptoms to get worse, which could increase the chance for complications. Your healthcare providers can talk with you about the benefits of treating your condition and the risks of untreated illness during pregnancy.
There are a variety of medications used to treat lupus. For information on specific medications contact MotherToBaby and see our medication fact sheets at https://mothertobaby.org/fact-sheets/.
I have lupus. Can it make it harder for me to get pregnant?
Lupus itself is not expected to affect a woman’s ability to get pregnant. Some women with high disease activity have reported missing periods, which might make it harder to get pregnant. Some medications used to treat lupus can affect how the ovaries work and might make it harder to get pregnant. Women with kidney problems due to lupus might also have a harder time getting pregnant.
Does having lupus increase the chance of miscarriage?
Miscarriage is common and can occur in any pregnancy for many different reasons. Lupus might increase the chance of miscarriage, especially in women with high disease activity, kidney disease, and the presence of certain antibodies (such as antiphospholipid).
Does having lupus increase the chance of birth defects?
Every pregnancy starts out with a 3-5% chance of having a birth defect. This is called the background risk. There are rare cases of babies born to women with lupus who have a condition called chondrodysplasia punctata that causes problems with bone and face development. Most babies born to women with lupus do not have this condition.
Does having lupus increase the chance of other pregnancy-related problems?
Women with lupus have a higher chance of developing preeclampsia (high blood pressure and problems with organs, such as the kidneys), which can lead to seizures (called eclampsia). Women with lupus also might have a higher chance of preterm delivery (delivery before week 37), and poor growth of the fetus. Having flares during conception and early in pregnancy, having kidney disease, and having high blood pressure before pregnancy can also increase the chance of these complications.
What is neonatal lupus erythematosus?
If a woman who is pregnant has lupus, their child can have symptoms of lupus right after delivery. This is called neonatal lupus erythematosus (NLE). NLE is seen mostly in children who were exposed to certain antibodies (anti-Ro and/or anti-La) during pregnancy. Signs of neonatal lupus include rash, blood abnormalities that only show up on a blood test, and liver problems. These are usually temporary and often go away by 6 months of age. The most serious complication of NLE is a heart rhythm problem called congenital heart block. Congenital heart block can cause death in up to 30% of infants. Most babies born to women with lupus do not have heart block.
Does having lupus in pregnancy affect future behavior or learning for the child?
A couple of small studies reported that having lupus in pregnancy might increase the chance of learning problems and developmental delays. Another study, looking at approximately 100 women with lupus, did not see an increased chance for developmental problems. As there can be many things that affect future behavior and learning for a child, it is hard to know if lupus, pregnancy complications (such as preterm delivery), medications used to treat lupus, or other factors are the cause of these problems.
What screenings or tests are available to see if my pregnancy has birth defects or other issues?
Prenatal ultrasounds can be used to screen for some birth defects and to monitor the growth of the pregnancy. Your healthcare provider might do a special ultrasound of the fetal heart called a fetal echocardiogram. This type of ultrasound is usually done between 18-24 weeks of pregnancy to look at the function and structure of the fetal heart and look for signs of congenital heart block. Talk with your healthcare provider about any prenatal screenings or testing that are available to you. There are no tests available during pregnancy that can tell how much effect there could be on future behavior or learning.
Breastfeeding while I have lupus:
Lupus does not appear to affect a woman’s ability to breastfeed. Lupus antibodies are not passed through breastmilk. For information on specific medications while breastfeeding, look for a fact sheet at https://mothertobaby.org/fact-sheets/ or contact MotherToBaby. Be sure to talk with your healthcare provider about all your breastfeeding questions.
If a man has lupus, can it affect fertility or increase the chance of birth defects?
Studies have suggested that lupus and certain medications used to treat lupus might affect a man’s fertility (ability to get a woman pregnant). In general, exposures that men 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/.
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