Ninety percent of the 1.5 million Americans with the autoimmune disease lupus are assigned female at birth. And because the condition frequently develops during a person's childbearing years, it's common to navigate lupus while simultaneously building a family, according to the Lupus Foundation of America (LFA).
"Many years ago, people with lupus were told they shouldn't get pregnant, but that's not the case in the modern era," says Laura L. Tarter, MD, director of Pregnancy and Reproductive Health at Brigham and Women's Lupus Program in Boston. Now, she says, the vast majority of people with lupus can become pregnant and go on to have a healthy baby.
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But while a healthy pregnancy with lupus is certainly possible, there are still elevated risks that are important to understand.
Lupus pregnancies are associated with higher rates of certain adverse outcomes, including gestational hypertension, preeclampsia, blood clots, kidney problems and premature birth, per the Centers for Disease Control and Prevention (CDC).
While this shouldn't deter or scare anyone — it certainly doesn't mean you will definitely develop these conditions — it does mean you'll need a little extra medical attention before and during pregnancy.
Because all of that can sound more than a little nerve-wracking, here are eight reassuring steps anyone with lupus can take to ensure you get the care you need during pregnancy and beyond.
1. Try to Plan Ahead
Of course, not every pregnancy is planned. But experts stress it's hugely beneficial if you're able to conceive when your lupus symptoms are well-managed or in remission for at least 6 months.
"The most important thing for people with lupus to know regarding pregnancy is to conceive during a time when your disease is inactive or very well-controlled," says Bonnie L. Bermas, MD, a professor in the Department of Internal Medicine at UTSouthwestern Medical Center in Dallas and a member of the Lupus Foundation of America Medical-Scientific Advisory Council.
That's because starting pregnancy with minimally active lupus is the best way to ensure you have a healthy pregnancy, according to the American College of Rheumatology's 2020 guidelines for reproductive care. "Having well-controlled disease is better for the mother and better for the baby," Dr. Tarter explains.
Regardless of whether you're hoping to get pregnant in the next few months or sometime down the road, talk to your rheumatologist about your goals as early as possible. Together, you can work to manage symptoms and determine whether you need to switch the medications you're taking (more on that below).
2. Assemble Your Prenatal Care Team
A pregnant person who is not considered high risk typically sees one prenatal care practitioner during the course of pregnancy, usually an obstetrician, a family practice doctor or a certified nurse-midwife. But if you have lupus, your prenatal care team will look a little different.
"I recommend patients assemble their health care team that includes providers who have expertise in rheumatology and providers who have expertise in high-risk pregnancies," Dr. Bermas says.
For most pregnant people with lupus, that probably means continuing to meet with the rheumatologist who already oversees your lupus care, as well as finding a maternal-fetal medicine specialist.
Also called a perinatologist, this is a type of ob-gyn who has completed extra training and specializes in high-risk pregnancies. Depending on how your pregnancy is progressing, your practitioners may also recommend you consult a neonatologist or other specialist, according to the American College of Rheumatology (ACR).
It may seem like a lot of doctors (and a lot of appointments to book), but your medical team plays a crucial role by working together to minimize your risk of developing complications such as preeclampsia or premature birth.
3. Meet With Them Regularly
Every pregnant person should attend all of their scheduled prenatal appointments, and this is especially critical for people with lupus.
One reason for this is you'll likely need additional screenings and tests, especially if your blood work shows certain antibodies associated with autoimmune conditions and adverse pregnancy outcomes.
If you have the antibodies anti-Ro and anti-La, for example, you might need more frequent fetal monitoring to make sure your baby's heart is developing as it should, per Harvard Health Publishing. (These antibodies are also linked to rare lupus symptoms in newborns, according to the LFA.)
Close contact with your prenatal care team also enables them to regularly screen you for flares (more on this below), as well as perform blood pressure checks for preeclampsia. This serious condition, which lupus patients do have an elevated risk of, can sometimes look a lot like lupus, Dr. Bermas notes.
"Both conditions can present with high blood pressure, sudden weight gain and swelling," she says. But some people with preeclampsia have no symptoms at all, making it even more important that you attend every appointment and scan.
4. Take a Prenatal Vitamin
Anyone who is pregnant should take a prenatal vitamin, according to the American College of Obstetricians and Gynecologists (ACOG), and this guidance holds true for those with lupus.
A prenatal offers reassurance that you and your baby are getting all of the vitamins and minerals you need, including folic acid, iron, calcium, vitamins C and D, choline and omega-3 fatty acids.
Pregnant people with lupus don't need a specialized prenatal vitamin or additional supplements unless a doctor recommends one, Dr. Tarter says.
So unless your health care team has told you otherwise, simply look for a prenatal that meets ACOG's nutritional guidelines, meaning it contains at least 400 micrograms of folic acid. This B vitamin, also known as folate, is crucial in pregnancy — especially in the first trimester — because it helps prevent birth defects.
5. Review Your Meds With Your Prenatal Care Team
In addition to having well-managed lupus symptoms before getting pregnant, it's equally important you're taking a medication that's pregnancy-safe, Dr. Tarter says.
Some lupus medications are teratogenic, which means they could be dangerous to a developing baby. If you're on a medication that isn't safe to continue during pregnancy (methotrexate, for example), your care providers can help you transition to one that is, such as hydroxychloroquine.
"Not all lupus medications are compatible with pregnancy, and patients need to be transitioned to pregnancy-compatible medications and observed for several months to make sure their disease is under good control on these medications," Dr. Bermas says.
Lupus medications can stay in your body for several months, per the LFA, making it extra important to make the switch as early as possible.
Your practitioner may also suggest you take a low-dose aspirin to help prevent preeclampsia; the ACR recommends 81 or 100 milligrams daily for people with lupus beginning in the first trimester. Your prenatal team will let you know if they think baby aspirin would be helpful for you.
6. Know What to Do if You Have a Flare
If you have lupus, you're likely very familiar with the term "flare," which refers to an outbreak of symptoms. Even if your lupus was well-managed or in remission when you conceived, there's still a chance the disease will flare during pregnancy.
Some estimates put the risk of a flare at around 40 to 65 percent, Dr. Tarter says. Flares are most likely to occur in the first or second trimester, according to the CDC.
"Given that there is a possibility of flaring, it is a disease that we have to be very careful about during pregnancy," Dr. Tarter says. "Flares and active lupus are a risk to a mother and developing baby."
All the more frustrating, it's often difficult to differentiate between a lupus flare and a "normal" pregnancy symptom. In a non-lupus pregnancy, it's common to experience lower back pain, joint pain or carpal tunnel, for example — and all of these can also be signs of a lupus flare, Dr. Tarter notes.
There are some warning signs of a flare you can look out for, per the CDC, such as sudden fatigue, pain, rash, a fever, a stomachache, dizziness or a severe headache.
Another clue, Dr. Tarter says, is to consider where in the body your lupus presented pre-pregnancy.
"Typically, patients experience flares in the same systems they've had in the past," she explains. "If a person had characteristic arthritis and joint pain, and that has been what their flares looked like pre-pregnancy, it's more than likely that would be the same organ systems involved [in pregnancy]."
Luckily, most lupus flares in pregnancy are mild. But it's important not to self-diagnose and to let your rheumatologist know right away if you think you're experiencing a flare, as well as to attend every prenatal appointment, because some flares are asymptomatic and can only be identified through lab work.
If your health care team determines you're having a flare, they can prescribe pregnancy-safe medications to manage the inflammation.
7. Think Ahead for Labor, Delivery and Postpartum
When it comes to labor, delivery and your postpartum care, your experience will likely look a lot like it would if you didn't have lupus.
Some people with lupus who are on large doses of steroids might need extra doses around delivery, especially if they have a C-section, Dr. Tarter says. "But that does not apply to most people, and is very rare," she says.
And though you may need a little more vigilance and care in the postpartum period if you take immunosuppressant medications, your postpartum experience should otherwise be very similar to that of any birthing parent without lupus, she adds.
Like all new parents, you'll want to make sure you have a support team in place for the first few weeks with a newborn, which can be challenging even after the most straightforward of pregnancies. Some people with lupus experience a flare shortly after giving birth, according to Harvard Health Publishing, so it's especially important to have support should that happen to you.
It's very likely you'll be able to breastfeed, too, if you choose. "Most medicines we use to treat lupus in pregnancy are also compatible with breastfeeding," Dr. Tarter says. Speak to your care team to make sure the medications you're taking are safe for your baby. (The LactMed database from the National Library of Medicine is also a helpful resource.)
8. Plan for Future Pregnancies With Your Rheumatologist
A new parent with lupus should feel reassured they can have subsequent pregnancies, too, Dr. Tarter says. If you hope to continue expanding your family in the future, talk to your rheumatologist about whether you should stay on the medication you took during pregnancy or switch to something else.
"If someone did really well on a medication they were on in pregnancy — they felt completely fine, had no issues, no flares — and want to get pregnant again a year later, they might stay on that same medication," she says. "But if there was anything rocky, they had even a small flare, it might make sense to change back [to their original medication] for a little while."
This is a highly personal decision and depends on your individual situation, Dr. Tarter adds. Like everything else with lupus and pregnancy — and pregnancy in general! — you and your health care team can work together to come up with a plan that works for you and your growing family.
- Centers for Disease Control and Prevention (CDC): "Having a Healthy Pregnancy with Lupus"
- Lupus Foundation of America (LFA): "Lupus and Pregnancy"
- Johns Hopkins Lupus Center: "Lupus and Pregnancy"
- Harvard Health Publishing: "Considering pregnancy and have lupus? Plan ahead"
- Arthritis & Rheumatology: "2020 American College of Rheumatology Guideline for the Management of Reproductive Health in Rheumatic and Musculoskeletal Diseases"
- Stanford Medicine Children's Health: "Lupus and Pregnancy"
- National Library of Medicine, MedlinePlus: "Choosing the right health care provider for pregnancy and childbirth"
- American College of Obstetricians and Gynecologists (ACOG): "Nutrition During Pregnancy"
- National Institutes of Health, Office of Dietary Supplements: "Folate"
- Centers for Disease Control and Prevention (CDC): "Managing Lupus"
- LFA: "What is neonatal lupus?"
Is this an emergency? If you are experiencing serious medical symptoms, please see the National Library of Medicine’s list of signs you need emergency medical attention or call 911.