How to Navigate Pregnancy With Lupus

If you have lupus and are considering starting a family, you likely have many questions and concerns. Perhaps you just found out you’re expecting, and you want to know what the next nine months will look like and how your lupus might affect your pregnancy.

Lupus is a chronic autoimmune disease that causes inflammation and tissue damage in the body. People with lupus have a higher risk of pregnancy complications. But the good news is that when lupus is properly managed before conception and during pregnancy, it’s possible to have a healthy gestation.

We reached out to experts to learn whether lupus alters fertility, how lupus impacts a pregnancy, and whether lupus may affect your baby or your breastfeeding experience.

What Is Lupus?

Lupus (systemic lupus erythematosus) is a chronic condition where the immune system attacks the body, causing widespread inflammation and tissue damage. Lupus can affect various organs and tissues, including your skin, kidneys, lungs, joints, heart, and brain. Lupus affects about 200,000 Americans and is far more common in young women, with about 9 in 10 cases occurring in women between the ages of 15 and 44.

People who have lupus will experience times where their symptoms “flare” and other times when they're in remission. Lupus impacts everyone differently, with some experiencing more severe side effects than others. Symptoms of lupus can include a rash on the face and cheeks, fatigue, arthritis in the joints, sun sensitivity, hair loss, fevers, and swollen glands. When lupus is more advanced, it can cause kidney and heart damage, memory issues, blood clots, and difficulty breathing.

Experts aren’t entirely sure what causes lupus, but it’s likely triggered by a combination of factors, including heredity, environmental exposures (viruses, smoking, medications) and immunological and inflammatory issues.

Can You Get Pregnant with Lupus? 

Patients with lupus often have concerns when it comes to fertility and getting pregnant, says Sasha Andrews, MD, maternal-fetal medicine specialist at Pediatrix Medical Group. “In general, lupus alone is not expected to decrease the ability to conceive,” she assures. Still, certain medications, menstrual irregularities, and some antibodies associated with lupus may influence fertility, Dr. Andrews says.

Jane Salmon, MD, rheumatologist and director of Lupus and APS Center of Excellence, says that people with lupus can get pregnant, and in most cases, will have successful pregnancies. However, when you are considering conceiving, it’s important to understand that lupus will put your pregnancy in a high risk category.

“Having lupus does lead to an increased risk of certain pregnancy complications, including miscarriage, preeclampsia, fetal growth restriction due to placental dysfunction, and preterm delivery,” says Dr. Salmon. But not everyone with lupus will have the same risks. Your risk increases if you are having a lupus flare in early pregnancy, if you have lupus kidney disease, and if you are positive for antiphospholipid antibodies, says Dr. Salmon.

All of this is why it’s important to be in close contact with a healthcare provider as you're considering trying to conceive, so that you can go into pregnancy as healthy as possible.

How Might Lupus Affect Your Pregnancy? 

As the Centers for Disease Control and Prevention (CDC) notes, having lupus makes your pregnancy “high risk,” which means that you have an increased chance of certain complications. But this also means that you will be given more thorough and specialized care during pregnancy, childbirth, and postpartum.

“Lupus can affect pregnancy in a variety of ways, and increases the risks for both the patient and baby,” says Dr. Andrews. This includes a higher risk of miscarriage, preterm birth, fetal growth restriction (babies born smaller than normal), preeclampsia (high blood pressure during pregnancy), and unplanned C-section deliveries. “Unfortunately, pregnant patients with lupus have higher rates of blood clots, infection, stillbirth and overall mortality,” Dr. Andrews says.

This information can be scary to hear, but the truth is that when your lupus is under control and your pregnancy is well monitored, your risk decreases. It’s also important to understand that lupus affects each pregnancy differently, says Adi Davidov, MD, associate chair of OB/GYN at Staten Island University Hospital, part of Northwell Health in New York.

“Lupus is a very complicated disease and every patient with lupus manifests a bit differently,” Dr. Davidov notes. “That is why it is very important that people with lupus see a lupus specialist on a regular basis.”

Will My Baby Get Lupus?

Lupus is not a contagious disease, but because lupus is likely an inherited condition, it’s possible that your child will develop lupus later in life, says Caroline Siegel, MD, rheumatology fellow at Hospital for Special Surgery. “Because genetic factors contribute to the development of lupus, first-degree relatives of people with lupus are more likely to develop lupus themselves compared to people without affected family members,” Dr. Siegel says.

Infrequently, babies are born with a condition called neonatal lupus, which is caused by antibodies associated with lupus being passed to the baby during gestation, says Dr. Andrews. “During pregnancy, these antibodies can cross the placenta and injure the baby's cardiac tissue, leading to heart block, which is a dangerously low heart rate,” she says. If it’s known that you carry these specific antibodies, your baby’s heart will be carefully monitored after birth, Dr. Andrews says.

Some babies born to parents with lupus develop skin rashes, but these usually go away on their own within a few months, says Dr. Andrews. “Newborns that are born with this condition (neonatal lupus) may be at increased risk of developing autoimmune disorders later in life,” she says.

Still, the vast majority of babies born with parents who have lupus are born healthy. Neonatal lupus is a rare condition, according to the CDC.

What to Consider Before Trying to Conceive

If you are considering pregnancy with lupus, your first goal is making sure your condition is under control before trying to conceive, says Dr. Davidov. Your other priority should be ensuring you have a provider (usually a rheumatologist) you trust to help you through pregnancy, he suggests. This provider will work with your OB-GYN (and possibly a maternal-fetal medicine specialist) during gestation.

“It is recommended that all people with lupus see a high risk doctor before they get pregnant in order to determine how to minimize their risks before they conceive,” says Dr. Davidov. “During this visit, the extent of the disease will be determined, and the patient will be counseled on what to expect during pregnancy.”

A healthcare provider may also want to review lupus medications you are taking to ensure that they are compatible with pregnancy, according to the Lupus Foundation of America. This may mean switching to more pregnancy-friendly medication in the 3-6 months prior to conception.

Can You Breastfeed With Lupus? 

For most people with lupus, breastfeeding is encouraged, says Dr. Siegel. The biggest roadblock to breastfeeding is whether their lupus medication is compatible with nursing. But this is rarely an issue, according to Dr. Siegel. “Most medications used to treat lupus are compatible with breastfeeding due to minimal transfer into breast milk,” she assures.

That said, some medications used to treat lupus aren’t compatible with breastfeeding, Dr. Siegel adds. That’s why you should discuss any medication you are taking with a provider, so that alternatives can be looked into. You can also check LactMed, a database from the National Library of Medicine, which compiles the latest research on medications and their effects on breastfeeding.

A Word From Verywell

If you have lupus and are navigating pregnancy, it’s understandable that you may feel some apprehension and worry. Luckily, most people with lupus end up having healthy pregnancies and healthy babies. The key is getting on top of your condition before you conceive, and meeting with a specialist throughout your pregnancy. You should never hesitate to reach out to a provider along the way if you have any further questions.