Thinking about names, decorating the room, choosing tiny clothes—there’s nothing as exciting and absorbing as planning for a baby! Once upon a time, women with lupus were counseled against getting pregnant. Today lupus is much better understood, and successful pregnancies are the rule, not the exception. That’s great news for all the would-be moms with this challenging disease. But in order to make your pregnancy the best it can be, it’s essential to make a pregnancy plan with both your rheumatologist and your obstetrician. That’s because your health and your baby’s health need to be closely followed before, during, and after your pregnancy. Take this list with you when you’re ready to talk to your doctors about having a baby, and make sure to add anything else they want you to know.
1. Plan ahead—way ahead!
- The best pregnancy outcomes happen when lupus has been inactive for at least six months before you conceive.
- Before you conceive, your doctors need to review your medications. Certain medications can cause birth defects in your baby, so you may need to stop a medication or start a new one or switch to something safer.
- Because pregnancy is considered high-risk for women with lupus, your medical team should include a maternal-fetal specialist who specializes in high-risk pregnancies.
- If you see a nephrologist (kidneys) or cardiologist (heart) or other medical specialists, those doctors also need to know that you’re planning a pregnancy.
2. Find out which birth control method is right for you.
- You want to avoid becoming pregnant unexpectedly—especially if your lupus is active or you’re taking medicine that may cause birth defects.
- The birth control choices you make should be based on your particular medical profile.
- The doctor who prescribes your birth control method can tell you about the safest options for you.
- Examples include birth control pills in different dosages of estrogen and progestin; progestin-only implants that are placed under the skin; Depo-Provera® injections; intrauterine devices (IUDs); and barrier methods (diaphragm, condom).
3. Be aware of lupus-related complications that could affect you or your baby during pregnancy.
- Kidney disease can develop during and after pregnancy. Warning signs are increased need to urinate, frothy or dark urine, and swelling of ankles, legs, and knees. If you’ve already had a kidney transplant, you’ll need extra monitoring while you’re pregnant.
- Blood clots can develop during pregnancy and after you give birth, especially if you have antiphospholipid antibodies in your blood or a low platelet count (thrombocytopenia). Antiphospholipid antibodies are known to cause miscarriages and many pregnancy complications. Blood clot warning signs include sudden onset of pain or a sudden color change in the skin (usually a darkening); swelling and tenderness in the place where the clot has occurred; and skin that’s hot to the touch. However, there may be little to no warning, too.
- Neonatal lupus is a rare complication that affects the unborn baby, caused by anti-Ro/SSA or anti-La/SSB antibodies in the mother’s blood that can cross the placenta into the baby. The most common symptom is a skin rash or lesions (sores) on the baby’s face and scalp; these nearly always disappear after six months. Liver or blood complications can also happen. Very rarely there will be an abnormal heartbeat. If you have positive anti SSA/SSB antibodies in your blood, your doctors will monitor your baby’s heart with an echocardiography (ECHO) sonogram between the fourth and sixth month (when the heart has developed enough).
4. Make sure your doctors are sharing information.
- All your doctors should have each other’s contact information so they can stay current with your lab test results, your overall health, and your baby’s progress.
- Make sure you’ve given written consent to each doctor for your test results and all other health information to be shared.
- Don’t be surprised by all the lab tests your doctors order—there’s a lot to watch out for, and the sooner signs of trouble are detected, the sooner they can be resolved.
5. Stay alert for signs of a lupus flare.
- Being pregnant can cause new health problems or worsen existing problems—or both. But it can be hard to know which ones are normal during pregnancy and which are signs of active lupus.
- Examples of problems that may occur while you’re pregnant and could be from a lupus flare are swollen joints, achy muscles, back pain, skin rash, heartburn, protein in your urine, and fatigue. These symptoms can also be part of a normal pregnancy, but to be on the safe side it’s always best let your doctor know right away if any of these occur.
- After you give birth you may experience lupus symptoms that are different from those you had before your pregnancy. Tell your doctors about all symptoms, especially if it’s something new.
6. Talk to your rheumatologist about preeclampsia.
- Having lupus is a risk factor for developing preeclampsia, which is a disorder of the third trimester of pregnancy characterized by high blood pressure, protein in the urine, and—if not treated—seizures.
- The risk of developing preeclampsia increases if you’re overweight, if you have antiphospholipid antibodies, active kidney disease or diabetes, and if you’ve had preeclampsia in a previous pregnancy.
- Preeclampsia can restrict the baby’s growth and can lead to preterm delivery; in the worst case it can cause miscarriage. The only definitive treatment for preeclampsia is delivery of the baby and placenta.
- Warning signs include new high blood pressure, protein in the urine, or both. Expect your doctors to check for these symptoms at nearly every visit during your pregnancy.
- [Editor’s Note: The American College of Rheumatology’s Reproductive Health Guidelines now recommend aspirin for all lupus pregnancies to reduce the chances of preeclampsia.]
7. Know the risks and warning signs of gestational diabetes, kidney disease, and depression.
- Gestational diabetes (high blood sugar level) can start during pregnancy and can cause health complications in you and your baby. Being overweight when you become pregnant puts you at higher risk of developing this kind of diabetes. Moderate to high doses of steroids also increases risk.
- Kidney disease associated with lupus (lupus nephritis) can develop during pregnancy and can cause complications, so your rheumatologist will check your kidney function and urine tests throughout your pregnancy. Lupus nephritis can sometimes develop after the baby is born, too. The signs and symptoms include increased urination, frothy or dark urine, and swollen ankles and legs. Be sure to see your rheumatologist four to six weeks after you give birth so your blood and urine can be checked again.
- Depression can develop during pregnancy, especially during the first six months, or in the six weeks after you give birth. If you feel irritable, anxious, or sad, ask for help from a mental health professional.
8. Follow diet, nutrition, and exercise instructions from your doctors.
- Dietary guidelines for pregnant women with lupus are generally similar to those for most pregnant women, although a low-sodium diet may be required if you have high blood pressure (hypertension).
- Nutritional supplements such as calcium and vitamin D may be recommended by your doctors—but never take any supplements that your doctors don’t know about.
- Regular exercise is an important part of pregnancy. Benefits can include stronger bones, depression prevention, a healthier pregnancy overall, and a faster recovery after giving birth. Your doctors can recommend the best activities for you while you’re pregnant, and after the baby is born.
9. Know the medications that are safe and not safe for breastfeeding.
- Some medications can pass into your baby’s body during breastfeeding.
- Your obstetrician and your rheumatologist can tell you which medications are safe to take, and which should be stopped or replaced, before your baby is born.
- If you want to do some of your own research, you can look up individual medications at MothertoBaby.org.
10. Arrange for help after the baby is born.
- Organize extra help for the first few months after your baby is born: you can use the free time to recharge physically and mentally.
- People respond best to specific requests: ready-made meals, grocery shopping, house-cleaning, pet care, and baby-sitting are just a few examples.
- Set aside regular time for yourself, and try not to feel selfish for taking that “me” time—it will mean a healthier, happier you!
This list is for informational purposes only and is not intended to replace a physician’s independent judgment. Always consult your doctors before planning a pregnancy.
Medically reviewed on 12/13/18 by Eliza Chakravarty, M.D., Oklahoma Medical Research Foundation, Oklahoma City, OK
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Resources
Pregnancy and Rheumatic Disease, American College of Rheumatology
Fact Sheets, Mother to Baby
Inaugural ACR Clinical Guidelines for Reproductive Health, Rheumatology Network
Blood Clot Symptoms: How to Tell if You Have One, WebMD
Neonatal lupus: clinical features and management, Paediatr Drugs
