Considering pregnancy and have lupus? Plan ahead

Like many autoimmune disorders, lupus (systemic lupus erythematosus, or SLE) disproportionately affects women during child-bearing years. Lupus is one of more than 80 autoimmune illnesses that affect an estimated 23 million people in the US — and nearly 350 million people worldwide. If you have lupus or another autoimmune illness and you're planning to have kids, it's safest to think ahead.

Years ago, people with lupus or other autoimmune disorders were advised to avoid pregnancy. The thinking was that it was simply too risky for mother and fetus. That's no longer true: in most cases, following 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 might lupus or its treatment affect my fertility?

About 90% of people with lupus are biologically female, and the disease tends to begin between the ages of 15 and 35. So, family planning is a crucial part of lupus care.

Doctors once believed that active lupus interfered with fertility so much that pregnancy was unlikely. While this myth was debunked long ago, people with lupus may take longer than expected to become pregnant. This is more likely if you have active disease requiring aggressive treatment, or 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 taking care of pregnant people with fertility issues to fully review your situation.

For people with lupus who experience infertility, in vitro fertilization may be a good option. Because certain medicines, such as cyclophosphamide, may reduce fertility, your doctor may recommend adjusting these.

Egg freezing is another option. It can be done before starting medicine that reduces fertility, or to save younger, healthier eggs for the future in case pregnancy must be delayed for a while.

Will I need to change my treatment before pregnancy?

This depends on which medicines you take and how well controlled your illness is. Good control for at least three to six months before getting pregnant is ideal. An unplanned pregnancy can put both 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 counseled to avoid pregnancy, at least for a while, or to change medicines to better control your disease.

Some medicines taken for lupus are unsafe for a developing baby, and are generally avoided during pregnancy. Examples include methotrexate, mycophenolate, and cyclophosphamide. But the health and well-being of the mother must also be considered, since changing medications could put the mother's health at risk. With advance planning and coordination among your doctors, you can make changes to improve treatment safety.

What else should I do before trying to get pregnant?

It's a good idea to take a prenatal vitamin and/or a folic acid supplement. Check with your doctors for specific recommendations.

If you smoke, make every effort to quit. Nicotine products have 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 markedly increase your risk of having abnormal blood clotting. If you've found it difficult to quit, talk to your health care team for help. Your doctor may recommend medicines or nicotine replacement therapy to help you quit.

How might pregnancy affect my illness?

Many people with lupus don't notice a major difference in their disease during pregnancy. However, studies suggest that flare-ups of lupus tend to be more frequent during pregnancy. High blood pressure, preterm delivery, miscarriage, and impaired fetal growth are among the most common complications of lupus pregnancies.

Your doctor will likely recommend continuing treatments for lupus that are considered safe for the developing fetus, such as hydroxychloroquine, and also taking aspirin to help prevent complications. Closely monitoring you during pregnancy is warranted, to detect and treat lupus flare-ups or any of these complications.

Will my prenatal visits be any different because of lupus?

Because people with lupus have higher than average risks for pregnancy complications, a maternal fetal medicine doctor is often recruited to be part of your medical team. The schedule of routine tests to monitor pregnancy may be modified, too. For example, the risk of diabetes during pregnancy may be higher for people with lupus, possibly due to steroid treatment. So screening for diabetes may be recommended earlier than at the usual 24 to 28 weeks of pregnancy.

If you have certain antibodies in your blood (especially ones called anti-Ro and anti-La), your doctors may recommend more frequent fetal monitoring, with particular attention paid to the developing heart.

Even if everything is progressing normally, it's important not to skip regularly scheduled prenatal care.

Do people with lupus have more pain during pregnancy?

With or without lupus, pregnancy can be uncomfortable! Many women with lupus have arthritis pain, fibromyalgia, or other pain disorders. Daily activity can help. Yoga, walking, and swimming are all great forms of exercise before, during, and after pregnancy.

What about birth?

Fortunately, most women with lupus have a normal birth experience. If you were on blood thinners to prevent abnormal clotting during your pregnancy, your health care team may be more cautious about your risk of bleeding after birth, and will prepare for this by having medicines and blood transfusions ready. Epidural anesthesia, cesarean sections, and other options are generally available as needed for women with lupus.

What else is helpful to know?

In the weeks following a birth, some women do experience a lupus flare. Your health team will monitor you closely for this possibility.

If you hope to breastfeed, ask your care team about the medicines you take. Several medicines, including hydroxychloroquine, are safe to use during breastfeeding.

The bottom line

Most women with lupus can safely and successfully pursue pregnancy if they wish. When it comes to family planning for people with any autoimmune illness, it's essential to choose reliable sources of information, plan ahead, communicate regularly with your health care team, and — importantly — ask lots of questions.