Like many autoimmune diseases, lupus (systemic lupus erythematosus or SLE) disproportionately affects women during the childbearing years. Lupus is one of more than 80 autoimmune diseases that affect approximately 23 million people in the United States and nearly 350 million people worldwide. If you have lupus or another autoimmune disease and are planning to have children, it’s safer to think about the future.
Years ago, people with lupus or other autoimmune diseases were advised to avoid pregnancy. The idea was that it was just too risky for the mother and the fetus. This is no longer true: in most cases, following the expert guidelines now available can make a successful pregnancy possible. These guidelines explain good practices for a range of family planning issues. Below, we answer several common questions about fertility, pregnancy, birth and breastfeeding.
How can lupus or its treatment affect my fertility?
About 90% of people with lupus are biologically female, and the disease tends to start between the ages of 15 and 35. Thus, family planning is a crucial part of lupus care.
Doctors once believed that active lupus interfered with fertility so much that pregnancy was unlikely. Although this myth was debunked long ago, people with lupus can take longer than expected to get pregnant. It’s more likely if you have active disease requiring aggressive treatmentor if you have certain antibodies (called antiphospholipid antibodies) in your blood.
Your prenatal provider or rheumatologist may recommend that you see a maternal-fetal medicine specialist experienced in caring for pregnant women with fertility issues to fully review your situation.
For people with lupus who suffer from infertility, in vitro fertilization may be a good option. Because some medications, such as cyclophosphamide, can reduce fertility, your doctor may recommend adjusting them.
Freezing eggs is another option. This can be done before starting a drug that reduces fertility, or to save younger, healthier eggs for the future in case pregnancy has to be delayed for a while.
Will I need to change treatment before pregnancy?
It depends on the medications you take and how well you control your disease. Good control for at least three to six months before getting pregnant is ideal. An unplanned pregnancy can put you and the pregnancy at risk.
If your lupus has been poorly controlled or if it affects major organs such as the heart, lungs or kidneys, you may be advised to avoid pregnancy, at least for a while, or to change your medicine to better control your disease.
Some medications taken for lupus are dangerous for a developing baby and are generally avoided during pregnancy. Examples include methotrexate, mycophenolate and cyclophosphamide. But the mother’s health and well-being must also be taken into account, as switching medications could put the mother’s health at risk. With advance planning and coordination between your doctors, you can make changes to improve processing security.
What else should I do before trying to get pregnant?
It’s a good idea to take a prenatal vitamin and/or folic acid supplement. Check with your doctors for specific recommendations.
If you smoke, do all you can to quit. Nicotine products pose many health risks, such as an increased risk of cancer, heart attack, stroke, and lung disease. And the combination of lupus, pregnancy, and smoking can significantly increase your risk of having abnormal blood clotting. If you are having trouble quitting smoking, talk to your healthcare team for help. Your doctor may recommend medication or nicotine replacement therapy to help you quit smoking.
How can pregnancy affect my disease?
Many people with lupus do not notice a major difference in their disease during pregnancy. However, studies suggest that lupus flare-ups tend to be more common during pregnancy. High blood pressure, premature delivery, miscarriages and fetal growth disorders are among the most common complications of lupus pregnancies.
Your doctor will likely recommend that you continue lupus treatments that are considered safe for the developing fetus, such as hydroxychloroquine, and also take aspirin to help prevent complications. Close monitoring during pregnancy is warranted, to detect and treat lupus flare-ups or any of these complications.
Will my prenatal visits be different because of lupus?
Because people with lupus have higher than average risks of pregnancy complications, a maternal-fetal medicine doctor is often recruited to be part of your medical team. The schedule for routine tests to monitor pregnancy may also be changed. For example, the risk of diabetes during pregnancy may be higher in people with lupus, possibly due to steroid treatment. Thus, screening for diabetes may be recommended earlier than the usual 24 to 28 weeks of pregnancy.
If you have certain antibodies in your blood (especially those called anti-Ro and anti-La), your doctors may recommend more frequent fetal monitoring, paying particular attention to the developing heart.
Even if everything is going normally, it is important not to skip regular prenatal care.
Do people with lupus have more pain during pregnancy?
With or without lupus, pregnancy can be uncomfortable! Many women with lupus suffer from arthritis pain, fibromyalgia, or other painful conditions. Daily activity can help. Yoga, walking, and swimming are great forms of exercise before, during, and after pregnancy.
What about birth?
Fortunately, most women with lupus have a normal childbirth experience. If you were taking blood thinners to prevent abnormal clotting during your pregnancy, your healthcare team may be more cautious about your risk of bleeding after birth and will prepare for this by preparing medications and blood transfusions. Epidural anesthesia, cesarean sections, and other options are usually available as needed for women with lupus.
What else is useful to know?
In the weeks following childbirth, some women experience a flare-up of lupus. Your health team will monitor you closely for this possibility.
If you are hoping to breastfeed, ask your healthcare team about the medications you are taking. Several drugs, including hydroxychloroquinecan be used safely while breastfeeding.
The bottom line
Most women with lupus can safely and successfully continue a pregnancy if they choose. When it comes to family planning for people with autoimmune disease, it is essential to choose reliable sources of information, to plan ahead, to communicate regularly with your healthcare team and, above all, , to ask a lot of questions.