FAQ

• While many women with lupus or systemic lupus erythematosus (SLE) are at higher risk for pregnancy loss (miscarriage), preterm birth (premature babies), and birth defects, it is possible to have a health pregnancy with lupus. Planning is key! Women who get pregnant when their disease activity is low or quiescent (meaning minimal signs of inflammation such as low levels of protein in urine) and who are on pregnancy-compatible medications have the best chance for a healthy pregnancy and baby.
• Pregnancies in women with active lupus or who are taking medicines that can cause birth defects can have a higher risk of pregnancy loss (miscarriage), pre-term birth (premature), or birth defects.
• It is important to talk to your rheumatologist about how active your lupus is right now. In some women, lupus can be active without a lot of noticeable symptoms.
• Show this Pregnancy Planning Handout to your provider to help you plan for a healthy pregnancy.

• Yes! Low dose aspirin, generally meaning 81 milligrams a day (a baby aspirin), can decrease the risk of preeclampsia. Preeclampsia is a serious condition that needs immediate medical care and treatment and usually requires immediate delivery of the baby. This may mean a preterm (or early) birth, and premature birth may lead to health complications for the baby.
• Studies show that the rate of preeclampsia in pregnant women with lupus is between 10% and 35%, compared to about 3% of pregnancies in healthy women.
• Preeclampsia can happen in the second half of pregnancy (after 20 weeks). Symptoms include high blood pressure and protein in the urine (proteinuria).

The American College of Rheumatology and the American College of Ob-Gyn recommend that all women with lupus take 81 mg of aspirin every evening during pregnancy. You should start taking this aspirin towards the end of the first trimester (about 13 weeks). It is important to start before 16 weeks of pregnancy.

• The Ro or SSA antibodies (two names for the same antibody) can in rare cases cause a permanently slow heartbeat in the developing fetus. This is called congenital heart block, and it happens to one or two out of 100 babies in mothers with these antibodies. If the mother has had a baby with congenital heart block, then the next pregnancy has about a 20% chance of having congenital heart block.
• Almost half of all women with lupus have the Ro or SSA antibody. They can also be found in women with Sjogren’s syndrome. Some women have these antibodies without any symptoms of rheumatologic disease. Whether the mother has lupus, Sjogren’s, or no symptoms at all, these antibodies put the baby at the same level of risk.
• The American College of Rheumatology recommends that women with antibodies take hydroxychloroquine (HCQ) before getting pregnant or very early in pregnancy. This is because hydroxychloroquine can cut the risk for congenital heart block in half.
• Some doctors recommend having a fetal echocardiogram multiple times during the second trimester to look for early signs of congenital heart black. A fetal echocardiogram is an ultrasound done through your belly to look at details of the baby’s heart. If early changes related to congenital heart block are found, your doctor may recommend dexamethasone. This medication, like prednisone, can cross the placenta and decrease inflammation in the baby’s heart to help lower the risk of permanent congenital heart block.

• Not necessarily; it depends on the medication. Your chance of having a safe and healthy pregnancy is much better if your lupus is under control. For most women, this means taking medications to keep your lupus from flaring.
• Some medications, such as hydroxychloroquine (Plaquenil^® or HCQ), are considered “pregnancy-compatible,” which means that studies show they do not cause miscarriage, premature birth, or birth defects. In fact, pregnancies and babies are often healthier when the mother with lupus takes HCQ.
• Other meds, such as methotrexate (MTX) or mycophenolate (CellCept), are considered “not pregnancy-compatible” and ideally should be stopped before getting pregnant and replaced with a pregnancy-compatible medicine to control your disease activity. If you are pregnant and have been taking MTX, Cellcept, Myfortic, Revlimid, or Cytoxan, please click here for more information on what you can do.

The Medications page has more information on which medicines are compatible with pregnancy. This Pregnancy Planning Handout can help you work with your provider to plan your meds and pregnancy timing.

• Yes! The American College of Rheumatology strongly recommends that all women with lupus take hydroxychloroquine (also known as Plaquenil^® or HCQ) throughout pregnancy. Stopping hydroxychloroquine for a pregnancy increases the risk for lupus flare and the need for prednisone, which can increase the risk of preterm birth.
• In a small study, 5 out of 7 women with very low levels of HCQ in their blood (meaning they are not taking HCQ regularly) delivered their babies too early (prematurely), while only 4 out of 39 women who had levels of HCQ in their blood that showed they were taking their medicine regularly had their babies too early.
• Hydroxychloroquine does not cause pregnancy loss, preterm birth, or birth defects. It does cross the placenta, but this hasn’t been shown to harm the fetus. Instead, pregnancies and babies are healthier when the mother with lupus takes HCQ. Talk with your provider to plan for a healthy pregnancy.

• Taking methotrexate in the early weeks of pregnancy can increase the risks for pregnancy loss and birth defects in some pregnancies.
• Up to 40% (4 out of 10) of pregnancies in women taking MTX end in a pregnancy loss.
• MTX increases the risk for birth defects. About 6% to 7% (6 or 7 out of 100) of babies born to moms taking MTX will have a birth defect. This is higher than the general risk for birth defects in all pregnancies, which is 3% (3 out of 100).
• If you have found out you are pregnant while taking MTX, here are a few things to do:
  • Stop taking MTX.
  • Call your rheumatologist and obstetrician (OB/GYN) if you have one. They will be able to tell you about the risks and options.
  • Increase your folic acid to 5mg a day for the rest of the pregnancy. Use the pills you have for this as a start and ask your doctor for a new prescription.

• Taking mycophenolate in the early weeks of pregnancy can increase your risk for pregnancy loss (miscarriage) and birth defects.
• About 4 out of 10 pregnancies with early mycophenolate exposure result in a pregnancy loss, which can occur at any time during the pregnancy.
• The risk for birth defects increases to about 25% with mycophenolate exposure. This means that about 1 out of 4 babies born will have a birth defect, most commonly abnormalities of the facial bones or ears.
• If you have found out that you are pregnant while taking mycophenolate, here are a few things to do:
  • Stop taking the mycophenolate.
  • Call your rheumatologist. They may want to replace your mycophenolate with another immunosuppressant that is compatible with pregnancy, as keeping your lupus under control throughout pregnancy is important for the health of your baby.
  • Call your obstetrician if you have one. If you don’t have one, ask your primary care doctor or rheumatologist for an expedited referral. The obstetrician will be able to talk you through the risks and options.

• The American College of Rheumatology guidelines say that it is OK for a man to continue any anti-rheumatic medications except for:
  • Cyclophosphamide (Cytoxan): Stop 12 weeks prior to attempted conception.
  • Thalidomide: Stop at least 4 weeks prior to attempted conception).
• Men taking a newer medication, such as Benlysta (belimumab), should consult their rheumatologist if they wish to start a family. Due to limited data, the American College of Rheumatology does not have guidelines for safe use of these medicines.
• It is recommended that the father continue taking the following medications, as there has not been a report of an infant born with a birth defect due to the father taking any these:
  • Azathioprine
  • 6-mercaptopurine
  • Colchicine
  • Hydroxychloroquine
  • TNF-inhibitors
  • Leflunomide
  • Methotrexate
  • Mycophenolate
  • NSAIDs
  • Rituximab
  • Tacrolimus
  • Cyclosporin

The American College of Rheumatology Reproductive Health Guidelines include the following recommendations:

Rituximab:  women should not take rituximab (Rituxan and other brand names) in pregnancy unless they need it to control very active lupus. If rituximab is needed it is better to take it in the first half of pregnancy (before 20 weeks) then in the second half. Towards the end of pregnancy rituximab will transfer across the placenta and can result in the baby being born without B cells, which puts them at higher risk for infection.

Belimumab: women should stop taking belimumab (Benlysta) one to three months prior to getting pregnant, if possible. If you do get pregnant while taking belimumab, talk with your rheumatologist about other medications to control your lupus as controlling disease activity increases the likelihood of a healthy baby.

IVIG:  IVIG (Intravenous Immunoglobulin) is considered compatible with pregnancy. It is not known to increase the risk for pregnancy loss, preterm birth, or birth defects. If IVIG is effective in controlling your lupus, then it is likely best to stay on this medication through pregnancy.

• Many forms of birth control, or contraception, are safe for women with lupus. If your lupus is reasonably well controlled and you are at low risk for blood clots, almost all types of contraception are safe, including “the pill” (birth control pills that have estrogen). Studies of women with mild to moderate lupus taking birth control pills have found NO increase in lupus activity.
• Show this Birth Control and Lupus Handout to all of your providers to help decide what is the best choice for you.
• Blood clot risk: If you are at increased risk for blood clots (had a prior blood clot that required taking a blood thinner at home, have elevated antiphospholipid antibodies, or have active lupus in the kidneys), you should NOT use the pill with estrogen (the mini pill is ok to use), the ring, the patch, or “the shot” (Depo-Provera).
  • Women at increased risk for blood clots CAN use progesterone-only pills (the “mini” pill), an IUD (with or without progesterone), or the implant.
• High disease activity: If your lupus is highly active according to your rheumatologist, you should NOT use the pill with estrogen (the mini pill is ok to use), the ring, or the patch. If you have more than 3 grams of protein in your urine, you also should not use the shot (Depo-Provera).
• Barrier methods: All women with lupus can use barrier methods for birth control, including condoms, diaphragms, and spermicide.
  • These forms are much less effective at preventing pregnancy than birth control that your doctor puts in (IUD or implant) or hormonal contraceptives (such as the pill, patch, ring, or shot). However, using a barrier method along with a hormonal method provides additional pregnancy prevention. Condoms are the only way to prevent sexually transmitted infections, such as HIV and HPV.

• Yes! All women with lupus can use emergency contraception (EC), such as Plan B One Step. These medications contain progesterone only; they do not increase the risk for blood clots and will not cause a lupus flare.
• You can purchase some types of emergency contraception without a prescription at your local pharmacy or online (Amazon, for example). EC needs to be taken within 3 to 5 days of having sex (depending on type of EC), and the sooner you take it the better the chance of preventing pregnancy.
• EC will NOT cause an abortion. It works by preventing ovulation and by keeping the sperm away from the egg.
• Some women keep EC in their medicine cabinet at home “just in case.”
• Your gynecologist has other options for emergency contraception, including inserting a copper IUD and prescription medications. These may be effective up to 5 days after having sex and might be even more effective if your weight is high.
• For more information: ACOG EC FAQ and EC on The Bedsider

Also, this Birth Control and Lupus Handout can help you work with your providers to determine the best type of on-going contraception for you.