Scleroderma and Pregnancy 

Here’s what you should know if you are pregnant, planning to become pregnant and breastfeed.

By Mary Anne Dunkin Updated Nov. 7, 2022

Planning to have a baby can be an exciting time in life. But if you have systemic sclerosis, or scleroderma, the excitement can be tempered by concerns related to your disease: Will scleroderma affect fetal development? Will being pregnant make my scleroderma worse? Will scleroderma complicate my delivery or affect my ability to breastfeed or take care of my child?

While a diagnosis of scleroderma certainly brings challenges to pregnancy, proper planning and prenatal care can help ensure the best possible outcomes for you and your baby, says Lisa Sammaritano, MD, associate professor of clinical medicine in the Division of Rheumatology at Hospital for Special Surgery – Weill Cornell Medicine.

Here is what you need to know about pregnancy from the planning stages to delivery and beyond. 

Planning for Pregnancy

If you think you’d like to start a family, it’s important to wait at least three years after your scleroderma diagnosis to become pregnant. During the first three years, the course of the disease can be unpredictable, and flares are more likely.

Ideally, you should discuss family planning issues with your rheumatologist early on, not just when you’ve decided you would like to start trying to have a baby, says Dr. Sammaritano.

There is no evidence that having scleroderma will affect your ability to get pregnant, so it’s important to practice effective birth control until you decide the time is right to have a child.

Effects of medications: Planning for pregnancy should always involve a discussion of which medications you can and can’t safely continue during pregnancy. Methotrexate, cyclophosphamide, mycophenolate mofetil and thalidomide should be stopped at least three months before attempting pregnancy, due to the risk of severe birth defects and effect on fertility.

Pre-planning will allow you and your rheumatologist to make sure disease activity is low while you’re on pregnancy-compatible medications, says Dr. Sammaritano. “This process can take some time, since changing a medication means giving it several months to make sure that it works and doesn’t cause side effects,” she says.

Effects of scleroderma on the fetus: Planning should also include an evaluation of factors that could make pregnancy riskier. They include the presence of two autoantibodies, anti-Ro (SSA) and/or anti-La (SSB), which occur in 8% to 10% of women with scleroderma. The antibodies are associated with a low risk of congenital heart block (CHB), an abnormality in the rate or rhythm of the fetal heart. Higher antibody levels are associated with a greater risk of CHB. Third-degree or complete heart block, the most severe form, usually isn’t reversible.

Outcomes of babies born to moms with scleroderma have been generally positive. However, low-birthweight babies – defined as below the 10th percentile for their gestational age – are more common in mothers with scleroderma. This is due an increased risk of a condition called placental insufficiency, where the blood supply to the fetus is decreased. Because of the increased risks, it is important to see an OB/GYN who specializes in high-risk pregnancies. You may be also need to see doctors to monitor and manage other aspects of your disease.

Passing on scleroderma: There is a genetic component to autoimmune diseases, such as scleroderma. It’s possible that your child may develop scleroderma or another autoimmune disease, but many women with autoimmune diseases have healthy babies who don’t develop arthritis or any other type of autoimmune disease.

Disease activity during pregnancy: If your disease is stable when you become pregnant, research suggests that it’s likely to stay that way throughout pregnancy. In one study of 133 pregnancies in women with scleroderma, 5% experienced improvement and 7% experienced symptom worsening, while symptoms remained stable in the remaining 88%. Other research has shown that some symptoms, including Raynaud’s phenomenon and finger ulcers, are likely to improve during pregnancy, while heartburn (a common complaint among pregnant women with or without scleroderma) tends to worsen.


Pregnancy: The Whole Nine Months

If the drugs you were taking at conception are controlling your disease, your doctor will likely have you continue them throughout pregnancy if they are pregnancy-compatible.

Monitoring fetal development: Your doctors will monitor you for complications throughout pregnancy. If you test positive for anti-Ro (SSA) and anti-LA (SSB) antibodies, this may include monitoring the fetal heart rate from about the 16th until the 25th week of pregnancy.

Effects on delivery: While most women with scleroderma can deliver vaginally, any complications could necessitate an early delivery by C-section.


After Delivery

For most women with scleroderma, a healthy delivery and baby are possible.

Disease activity: If you notice your symptoms worsening, contact your rheumatologist, because some women experience increased disease activity after delivery. Even if your disease is stable, childbirth and caring for a newborn are exhausting, so fatigue is common with new motherhood.

Medication and breastfeeding: If controlling your disease after delivery requires a change in medication, be sure to let your doctor know if you are breastfeeding. Many medications, but not all, are safe for breastfeeding.

Caring for baby: Taking care of yourself now is especially important. Take your medications, eat healthfully, nap when the baby naps and get help from your partner, trusted family and friends, and even from paid help, if needed or possible. Parenthood is a challenging, lifelong job, but it also provides unique joys. Taking care of yourself now can help ensure your ability to care for your child in the years ahead.

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