For patients

Systemic sclerosis (scleroderma)

systemic sclerosis, scleroderma, SSc

Are you a clinician? See the clinical version of this page.

The short versionMany people with systemic sclerosis can have successful pregnancies, but it needs careful planning because of specific risks to the heart, lungs, and kidneys. A detailed check of your heart and lungs before pregnancy is important, and some situations, such as significant lung artery pressure, make pregnancy very high-risk. Care is shared with a high-risk pregnancy team.

What to know

The pre-pregnancy check

Before pregnancy, your team checks your heart and lungs (including an echo and breathing tests) and your kidneys, and starts folic acid. Pregnancy is best planned once the disease is stable, and is generally advised against if there is severe organ damage, or delayed if the disease started recently.

Lung artery pressure (pulmonary hypertension)

If the pressure in your lung arteries is significantly raised, pregnancy is considered very high-risk and is usually advised against. This is checked before pregnancy.

Kidneys (scleroderma renal crisis)

A serious kidney complication can occur. If it does, the standard medicines (ACE inhibitors) are used even in pregnancy, because untreated renal crisis is more dangerous to you and the baby than the medicine is. Your team watches blood pressure and kidney function very closely.

Pregnancy outcomes

Most pregnancies end in a healthy birth, but there is a higher chance of early birth and a smaller baby, so growth is watched closely. In one large study, 25 in 100 babies were born early (before 37 weeks), compared with 12 in 100 in the general population. Reflux and Raynaud's (cold, colour-changing fingers) are common; Raynaud's often eases in the middle of pregnancy.

Medicines

Some medicines are adjusted for pregnancy. Certain blood-pressure medicines (ACE inhibitors) are not started routinely in pregnancy, but they are used if scleroderma renal crisis develops.

The numbers, in plain terms

25% vs 12%

About 25 in 100 SSc pregnancies ended in early birth (before 37 weeks), versus 12 in 100 in the general population.

6% vs 1%

About 6 in 100 babies were smaller than expected (growth restriction), versus 1 in 100 generally.

iThis page helps you prepare a conversation with your care team. It does not replace individual medical advice. Always confirm your own plan with your rheumatology and pregnancy team.
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