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Planning for a healthy pregnancy can feel complicated for anyone. If you’re living with lupus — especially systemic lupus erythematosus (SLE), the most common form — you may have more questions to think through. Should you adjust your medications? Could pregnancy trigger a lupus flare? How might your condition and its treatments affect your reproductive health or your baby’s development?
The good news: Many people with lupus have successful pregnancies and healthy babies. With the right care and planning, it’s possible to lower risks and feel more in control.
Still, conversations about fertility and family planning don’t always come up during routine lupus care. To help you feel informed and supported, MyHealthTeam spoke with Dr. Irene Blanco, a rheumatologist at Northwestern Memorial Hospital and professor at Northwestern University Feinberg School of Medicine. She shares what to know at every step — from preparing for pregnancy to postpartum recovery.
“We want to have planned lupus pregnancies because lupus pregnancies can be a little bit complicated,” Dr. Blanco said.
For people living with lupus who are thinking about becoming pregnant, Dr. Blanco recommends discussing family planning with a full healthcare team — including a rheumatologist and any other specialists, such as a cardiologist, nephrologist, or hematologist. Ideally, she advises bringing it up at least six to 12 months before trying to conceive, which allows time to adjust medications and manage lupus activity in advance.
Dr. Blanco also recommends visiting the Healthy Outcomes in Pregnancy With SLE Through Education of Providers (HOP-STEP) website: “It’s a phenomenal resource. Everybody should know about it.”
One reason to begin pregnancy planning early is to transition safely from medications that could be harmful during pregnancy to ones that are considered safer. The HOP-STEP site provides a “go list,” “caution list,” and “stop list” of lupus medications, based on the American College of Rheumatology’s reproductive health guidelines. Treatments on the stop list are known to increase the risk of birth defects.
Importantly, even though these recommendations are backed by strong scientific evidence, always talk to your healthcare team before making any changes to your treatment. Some medications for lupus and other health conditions need to be tapered gradually, and stopping them abruptly could trigger a flare or other serious complications.
Most of the medications on the stop list should be stopped at least three months before trying to become pregnant. Some also require a specific “washout” process to fully clear them from the body. Lupus medications on the stop list include:
Other medications fall on the caution list. For example, rituximab and belimumab don’t have enough safety data in pregnancy. However, 2024 recommendations from the European Alliance of Associations for Rheumatology (EULAR) conditionally support using these drugs during pregnancy if they’re needed to control disease activity.
If you’re taking the blood thinner warfarin, your doctor may recommend switching to a different medication that’s safer during pregnancy.
If you’re taking a lupus medication that needs to be stopped before pregnancy, it’s still important to stay on a treatment plan that keeps your condition under control. “The more we can control the disease and have patients be on pregnancy-safe medication as they go into the pregnancy, the better the long-term outcomes,” Dr. Blanco said.
Planning ahead gives you and your healthcare team time to find the right medication that works best for you. “We need to be able to have enough time to not only switch patients from these harmful medicines to other medicines, but also watch them on the other medicines,” Dr. Blanco noted. “Because if they have an allergy, a side effect, their lupus doesn’t tolerate it, then we need to plan accordingly because the best thing to do is to have their disease activity be as quiet as possible for at least six months before pregnancy.”
Lupus medications generally considered safe during pregnancy include:
Some blood thinners are also considered pregnancy-safe. These include heparin and aspirin. You may also be able to take acetaminophen during pregnancy but can take nonsteroidal anti-inflammatory drugs (NSAIDs) for pain only until the third trimester. NSAIDs must be stopped at that point for the safety of the fetus’s developing circulation, Dr. Blanco explained.
Even medications labeled as “pregnancy-safe” can carry risks depending on your health history and symptoms. Always talk with your rheumatologist or OB-GYN before starting, stopping, or continuing any medication during pregnancy. Your care team can help you make the safest choices for your body and your baby.
Lupus, along with some of the medications used to treat it, can affect fertility (your ability to become pregnant) and your ability to stay pregnant.
Certain medications used to treat severe lupus, such as cyclophosphamide, can reduce fertility, especially when used to manage serious organ involvement, according to Dr. Blanco. Lupus itself may also impact fertility, particularly during periods of high disease activity. Ongoing inflammation may make the body less receptive to pregnancy.
If you’re concerned about infertility, speak with your healthcare team. Fertility preservation options — such as egg freezing or in vitro fertilization (IVF) — may still be possible, even if you're taking medications that aren’t safe during pregnancy. “We may be able to do an egg harvest without switching meds,” Dr. Blanco explained.
Other lupus treatments can also affect your ability to stay pregnant. Dr. Blanco noted that exposure to mycophenolate during pregnancy carries about a 50 percent risk of miscarriage.
If you have an unexpected pregnancy, call your rheumatologist right away. They can help you understand how lupus and your current treatments may affect the pregnancy and talk through your options based on your health and goals.
Try not to panic — you’re not alone. Unplanned pregnancies are common, and your medical team is there to support you without judgment. The earlier you connect with your providers, the more options you’ll have to manage risks and make informed decisions that are right for you.
Compared to the general population, people with lupus have a higher risk of pregnancy complications. These may include:
You’ll work closely with your rheumatologist and obstetrician to manage your risk of pregnancy and lupus-related complications. You may see a high-risk pregnancy specialist, called a maternal-fetal medicine specialist. Dr. Blanco explained that at some hospitals, your main obstetrician will be a high-risk specialist. At others, the specialist may act as a consultant to a general obstetrician.
You may see other specialist providers, such as a nephrologist (kidney specialist), hematologist (blood), or cardiologist (heart), depending on your needs.
If you have active disease, you may have an increased risk of pregnancy complications. Dr. Blanco recommends that you take your lupus medications as directed during your pregnancy. “We want to keep things quiet,” Dr. Blanco explained.
Your healthcare team may also recommend other medications to help reduce the risk of complications. For example, people with antiphospholipid antibodies are at increased risk for developing blood clots, preeclampsia, and placental failure. These complications increase the risk of a miscarriage. Your doctor may suggest taking aspirin and a blood thinner if you have these antibodies and previously lost a pregnancy.
It’s also important to watch for signs and symptoms of pregnancy complications. “Lupus pregnancies can go a little sideways somewhat quickly,” noted Dr. Blanco. “If you start to feel headaches, blurry vision, really swollen legs, foaming of the urine, or you’re just checking your blood pressure at home and you see that it’s high, let your obstetrician and your rheumatologist know.”
If you’re living with lupus, you may need some additional tests and more frequent checkups during pregnancy. Even if you don’t have any additional complications, it’s recommended that you see your rheumatologist at least once every three months, in addition to your obstetrician visits.
Babies born to a person with lupus have a higher risk of growth problems and low birth weight. Regular ultrasounds can help check if your baby is growing the way they should.
If you test positive for anti-Ro/SSA or anti-La/SSB antibodies — common in some people with lupus — your baby may have a higher risk for neonatal lupus.
This condition can cause:
Most symptoms of neonatal lupus resolve within the first six months of life, as the maternal antibodies clear from the baby’s system.
However, a rare but serious complication of neonatal lupus is congenital heart block. A congenital heart block, especially a complete heart block, is typically irreversible and can lead to the loss of the fetus. Babies born with this condition may need a pacemaker.
To check for congenital heart block, your obstetrician should begin monitoring your baby’s heart rate regularly starting between the 16th and 18th week of pregnancy. Screening for heart issues is “typically either every week or every two weeks, depending on your local institution's practice,” Dr. Blanco said.
If any abnormalities are found, you may be referred to a pediatric cardiologist for further evaluation and care.
After giving birth, your body goes through many changes — and if you’re living with lupus, you may face a higher risk of postpartum flares. Talk with your healthcare team about whether your lupus medications need to be adjusted, especially if you plan to breastfeed. While many medications that are safe during pregnancy are also safe while nursing, it’s important to confirm this with your doctor.
“Having a chronic illness is hard. Having a newborn is hard. You take the two together, and it is hard,” Dr. Blanco said. “If you need help, let us know.”
Your healthcare team can help you manage your lupus to make it easier for you to recover and care for your baby.
On MyLupusTeam, people share their experiences with lupus, get advice, and find support from others who understand.
What advice do you have for other members planning a pregnancy? Let others know in the comments below.
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