Scleroderma and Pregnancy

Learn about the precautions you should take if you are pregnant, planning to become pregnant or breastfeeding.

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The nine months of pregnancy can be among the most exciting in any woman’s life. But if you have systemic sclerosis, or scleroderma, the excitement can be tempered by concerns related to your disease:  Will scleroderma affect my baby’s development? Will being pregnant make my scleroderma worse? Will scleroderma complicate my delivery or affect my ability to breast feed 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 for you to have a child.

Effects of medications on baby. Planning for pregnancy will always involve a discussion of which medications you can and can’t safely continue during pregnancy. Taking methotrexate and cyclophosphamide should be stopped before attempting pregnancy, due to their effects on fertility and possible risk of birth defects.

Pre-planning will allow you and your rheumatologist to make sure disease activity is low while 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 baby. Planning should also include an evaluation of factors that could make pregnancy riskier for you and your unborn baby. They include the presence of two autoantibodies, anti-Ro (SSA) and/or anti-La (SSB), which occur in between 8 and 10 percent of women with scleroderma. The antibodies are associated with a low risk for congenital heart block, an abnormality of the rate or rhythm of the baby’s heart, which can begin in the womb.

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 baby is decreased.

Because of the increased risks it will be important to see a high-risk OB/GYN. 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 percent experienced improvement and 7 percent experienced symptom worsening, while symptoms remained stable in the remaining 88 percent.  Other research has shown that some symptoms, including Raynaud’s phenomenon [link?] and finger ulcers, are likely to improve during pregnancy while heartburn (a common complain 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 as long as they are pregnancy-compatible.

Monitoring baby. Your doctors will monitor you for complications throughout pregnancy. If you test positive for anti-Ro (SSA) and anti-LA (SSB) antibodies this will include monitoring the baby’s heart until the 25th week of pregnancy.

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

Planning for your newborn’s care. During pregnancy it’s important to plan for the help you’ll need after you deliver. Even if your disease is well controlled you may have more fatigue than other new mothers, so you’ll likely need extra help once the baby comes.

Ability to breastfeed. If you’d like to breastfeed, scleroderma won’t prevent you from doing so, if your disease is well-controlled. While you can’t pass scleroderma to your baby, you can pass along some medications, so it’s important to speak with your doctor about drugs that are safe.

After Delivery

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

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

Medication and breast feeding. 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 paid help, if needed or possible. Parenthood is a challenging, lifelong job, but may provide 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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