If you have lupus, an autoimmune disease known more formally as systemic lupus erythematosus (SLE), you're probably wondering whether you can have a healthy pregnancy and a healthy baby.
Lupus can indeed impact pregnancy, since women are more likely than men to have an autoimmune disorder and the condition tends to appear in women who are in their late teens to early 40s, the prime years for having a baby. But the happy news is that if you take extra steps to control the disease, including planning to conceive when SLE symptoms are in remission and seeing a rheumatologist and maternal-fetal medicine specialist, your odds of a successful pregnancy are high.
Here's more about lupus symptoms and signs, the ways in which a case of lupus may affect pregnancy and how this autoimmune disease is treated and managed when you're expecting.
What is lupus?
Lupus, a chronic disease that affects more than 160,000 people in the U.S., occurs when your immune system can't tell the difference between your body's own healthy cells and foreign invaders, causing it to attack your cells by mistake. Lupus can develop in people of every race and ethnicity, but it is three times more common in Black women than in Caucasians.
SLE causes inflammation, swelling, pain and, in some cases, organ damage. It may also affect the joints, skin, kidneys, lungs and blood vessels. Lupus symptoms may periodically flare up and then subside, so aiming to conceive during a period of remission offers you the best chance for a safe and healthy pregnancy and baby.
What are the symptoms of lupus?
Cases of lupus tend to exhibit a range of symptoms from mild to severe. If you have SLE, you've likely experienced both periods of dormancy, when you have few or no signs of the disease, as well as times when lupus symptoms flare up and are rather intense.
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Here are the most common SLE symptoms to watch for:
- Swollen or painful joints
- Muscle pain
- Skin rash, which is often red and looks like a butterfly shape on the nose and cheeks, or a scaly rash that can leave scars
- Fever
- Fatigue
- Sores in the nose or mouth
- Chest pain when taking a deep breath
Can you get pregnant if you have lupus?
Yes, you can get pregnant if you have lupus. It's important that your lupus is under control before you start trying for a baby, and it's a good idea to have your pregnancy managed by a specialist. Your pregnancy will be considered "high risk" by your health care provider.
It's generally recommended that you strive to be symptom-free for at least six months before conceiving because getting pregnant during a flare-up can increase the risk of complications for both you and your baby, including high blood pressure during pregnancy (preeclampsia), miscarriage and stillbirth.[1]
Once your SLE is in remission, tell your doctor so he or she can check your disease status and help you find the right physician, usually a maternal-fetal medicine specialis, along with a rheumatologist, to manage your case. Your doctors will review the drugs you've been taking to ease symptoms and control flare-ups, and you might need to stop taking those that can be harmful during your pregnancy.
The good news: As long as your disease is in remission, your odds of getting pregnant are essentially normal. In fact, well-controlled lupus has few effects on fertility, though some women with lupus will go through menopause earlier than usual, and some drugs that treat the condition may lower fertility, so check with your doctor if you're thinking about trying to conceive.
How does lupus affect pregnancy?
Whether and how SLE affects pregnancy isn't absolutely clear, but it does seem that the women who do best are those who conceive during a quiet period in their disease. Those with the poorest pregnancy prognosis are women who get pregnant during a flare-up or have severe kidney impairment.[2] Ideally, kidney function should be stable for at least six months before conception.
There are a number of increased pregnancy risks associated with lupus, including:
- Preeclampsia. Expectant moms with lupus have a higher risk of developing preeclampsia. And the condition occurs more among those who also have kidney disease, diabetes or antiphospholipid antibodies, which result from a disorder of the immune system that attacks normal proteins in the blood.
- HELLP syndrome. HELLP (hemolysis, elevated liver enzymes and low platelets) is a rare but serious liver and blood-clotting disorder that occurs usually in conjunction with preeclampsia and almost always in the third trimester.
- Intrauterine growth restriction (IUGR). A baby with IUGR is not growing the way he should and lupus, especially lupus kidney disease, may be the cause.
- Preterm delivery. About one-third of pregnant women with lupus have a preterm delivery, and the same percentage will end up delivering their babies via C-section. It's recommended that women with lupus deliver at a hospital with a NICU whenever possible.
- Miscarriage and stillbirth. Fetal loss is more common in women with lupus, especially in cases with a prior loss and high levels of antiphospholipid antibodies.
Even if your disease is in remission, lupus pregnancies are still classified as high risk, which means you'll likely be assigned to a specialist who is familiar with these cases, and you'll receive some extra tests at every prenatal visit. You'll also have to visit the doctor more often: Most lupus patients check in with their practitioners every two to four weeks throughout pregnancy.
How does pregnancy affect your lupus?
While studies indicate that pregnancy doesn't affect the long-term course of this autoimmune disorder, the data is less certain about what a mom-to-be with SLE can expect symptom-wise during pregnancy itself. Luckily, women who conceive during a period of remission are less likely to experience a lupus flare-up during pregnancy.
And while pregnant women with active lupus may have symptoms, only 10 percent of those with SLE experience severe episodes during pregnancy. Flares typically occur during the first or second trimester and are often mild.
Still, you may require medication, so contact your doctor if you spot lupus signs. Your health care provider can also help you determine whether the body changes you're experiencing are caused by pregnancy or lupus; they may overlap or seem similar.
How does lupus affect your unborn baby?
Most babies who are carried to term aren't at risk of any additional conditions. There are no increased odds of birth defects, for instance. In fact, a study of women who became pregnant while their lupus was under control found that most had healthy, uncomplicated pregnancies as long as they didn't experience certain risk factors (i.e., having active lupus disease, high blood pressure requiring medication, low platelet counts and a positive lupus anticoagulant test result during the first trimester).[3]
As mentioned, complications can include an increased risk of preeclampsia, low birth weight and preterm birth, as well as more serious but rare conditions like neonatal lupus. About 3 percent of babies born to moms with lupus have a temporary form of lupus called neonatal lupus. This condition can range in severity, from just a facial rash or low blood cell count to more serious heart conditions.
Most of the time, the less serious symptoms in the baby disappear completely after six months. The more serious complication of congenital heart block, which causes a slow heartbeat, can be monitored during pregnancy and treated, if needed, after birth.
After one case of neonatal lupus there's an 18 percent chance that it'll occur in another baby, though the chance that your child will develop lupus in other forms in adulthood is extremely low.
Keep in mind that breastfeeding your baby if you have lupus is definitely possible, but consult your doctor before you begin. Some medications that you're taking to keep lupus at bay can pass through breast milk, so check each one to confirm that it's safe.
How do you treat lupus during pregnancy?
If your SLE remains in remission throughout the course of your pregnancy, you'll not need any special treatment during your nine months. If your lupus is active or if you experience a flare-up, however, your medical team will work with you to treat your disease in a way that's safest for you and your growing baby. Just as the treatment for lupus is individualized for non-pregnant women, so too will your treatment be tailored to your specific needs during pregnancy.
At each appointment, your practitioner will perform a series of tests — taking samples of your blood and urine, listening to your baby's heartbeat and asking you about possible lupus symptoms — to determine whether you need any additional treatment. You'll also receive more frequent ultrasounds.
If you have particularly high levels of lupus-related antibodies in your blood or have lost a previous pregnancy, for example, daily doses of aspirin and heparin may be prescribed.
Lupus is treated with a variety of other medications, both over-the-counter and by prescription. Speak with your doctor about the following treatments to determine the best ones for your particular case:
- Ibuprofen or naproxen. Anti-inflammatories like Advil or Aleve ease joint pain and fever. While these can be purchased over the counter, talk with your doctor first to find out if you can take these during pregnancy.
- Hydroxychloroquine. Plaquenil is this drug's brand name, and it's one of several malaria medications that can be taken during pregnancy to prevent SLE flares and relieve symptoms.
- Corticosteroids. Prednisone and other related drugs can reduce inflammation and are generally considered safe during pregnancy, as they don't cross the placenta when prescribed in low doses. Still, they can only be given for a short period of time since they carry a risk of birth defects, including a cleft palate.
Other medications such as methotrexate and cyclophosphamide aren't considered safe during pregnancy and should be discontinued before you conceive. If you experience fatigue, soreness or any other SLE symptoms (hair loss, fever, headaches, swollen joints, anemia, mouth ulcers), it's best to call your doctor right away rather than wait for your next appointment.
If you're further along in pregnancy and you haven't felt your baby move or feel nauseous or notice swelling — signs of preeclampsia — don't hesitate to make a trip to the ER. Most importantly, give yourself permission to rest if you feel tired. And be aware that there does appear to be an increased risk of SLE flare-ups after delivery, so your doctor will continue following you closely.
How to manage lupus during pregnancy
Successfully managing a case of lupus in pregnancy takes a team approach, so be sure to schedule and attend every prenatal care appointment you have and watch for symptoms of a flare-up.
In addition to seeing your OB/GYN regularly and your rheumatologist at least every trimester (and more if you have a resurgence of lupus), follow their guidance related to rest, diet and exercise. And if something doesn't feel right, check in with any of your doctors for help and reassurance.
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