Scleroderma and pregnancy

Scleroderma is a group of diseases that affects connective tissue in your body. Connective tissue is tissue that supports your skin and internal organs, like your kidneys, lungs and heart.

If you have scleroderma, your body makes too much of a connective tissue protein called collagen. When too much collagen builds up in your body, it causes your skin and connective tissues to get hard or thick. Scleroderma can lead to pain and swelling in your muscles and joints. There are two main kinds of scleroderma: localized and systemic. Both can be mild to severe, with periods of remission (wellness) and flares (illness).

Scleroderma can be a chronic health condition. A chronic health condition is a health problem that lasts for a long time or that happens again and again over a long period of time.

Scleroderma affects about 40,000 to 165,000 people in the United States. It often appears in women of childbearing age (16 to 44). With the right prenatal care, many women with scleroderma can have healthy pregnancies and babies. Prenatal care is medical care you get during pregnancy.

What is localized scleroderma?

Localized scleroderma only affects certain parts of your body, like your skin, skin tissues and sometimes muscles. Localized scleroderma doesn’t harm major organs. Localized scleroderma often gets better or goes away over time without treatment. But sometimes it can be severe and cause lasting skin changes. There are two types of localized scleroderma. Some people have both kinds; others have only one. The two types of localized scleroderma are:

  1. Morphea scleroderma. Reddish patches of skin on the chest, stomach, back, face, arms or legs usually are the first sign of morphea scleroderma. These patches become firm, oval-shaped areas with a white center and purple borders around the center. They don’t sweat and have little hair. This condition usually fades away in 3 to 5 years. But it can leave dark skin patches. In rare cases, some people have muscle weakness even after morphea scleroderma goes away.
  2. Linear scleroderma. The main sign of this condition is a line or streak of thick skin that’s discolored. It may be lighter or darker than the rest of your skin, or it may look yellow. The line usually runs up and down a leg or arm on one side of the body. Linear scleroderma usually lasts from 2 to 5 years, although it can last longer or go away and come back. Linear scleroderma doesn’t usually leave lasting changes in adults.

What is systemic scleroderma?

Systemic scleroderma can affect the whole body, including your skin, tissues, blood vessels and major organs, like your heart, lungs and kidneys. There are two kinds of systemic scleroderma: limited cutaneous scleroderma and diffuse cutaneous scleroderma.

Limited cutaneous scleroderma
This condition develops slowly over time. Signs and symptoms include:

  • Skin that gets thick on the fingers, hands, face, lower arms and legs. These skin changes happen little by little.
  • Calcinosis. This is when calcium forms in the connective tissues of the fingers, hands, face and torso (mid-section of the body), as well as on the skin above the elbows and knees. These calcium deposits can cause painful sores as they break through the skin. 
  • Raynaud’s phenomenon. This condition makes your fingers change color when you’re cold or worried. It can cause lasting damage to your fingertips. 
  • Esophagus problems. These can happen when the muscles of the esophagus (the tube that connects the throat to the stomach) don’t work well. It can be hard to swallow or you may have chronic heartburn or swelling of the esophagus. 
  • Sclerodactyly. This is when collagen builds up in the skin of the fingers. The skin becomes thick and tight. It can be hard to bend or straighten the fingers. 
  • Telangiectasia. This is swelling of tiny blood vessels that makes small red spots appear on the hands and face.

Diffuse cutaneous scleroderma
This condition usually comes on all of a sudden. Signs and symptoms include:

  • Thick skin on the hands that spreads quickly over much of the body to the face, upper arms and legs, chest and stomach
  • Damage to organs, like the intestines, lungs, heart and kidneys
  • Feeling tired
  • Not being hungry
  • Weight loss
  • Stiff, painful joints or joint swelling
  • Swollen, shiny or tight and itchy skin

What problems can scleroderma cause during pregnancy?

If you have scleroderma and you’re thinking about getting pregnant, talk to your health care provider. Your condition may affect when it’s safe for you to get pregnant.

If you have localized scleroderma, it may not affect your pregnancy at all. But systemic scleroderma can cause serious problems with your heart, lungs or kidneys. These problems are most likely to appear during the first 3 years of symptoms, and they can cause problems for you and your baby during pregnancy. For this reason, it’s best not to get pregnant during the first 3 years of scleroderma symptoms.

If you have systemic scleroderma, you may be more likely than other pregnant women to have:

  • Preeclampsia and other kinds of high blood pressure. Preeclampsia is a condition that can happen after the 20th week of pregnancy or right after pregnancy. It’s when a pregnant woman has high blood pressure and signs that some of her organs, like her kidneys and liver, may not be working properly. Some of these signs include having protein in the urine, changes in vision and severe headache.
  • Poor growth in your baby
  • Premature birth. This is birth that happens too early, before 37 weeks of pregnancy. 
  • Cesarean birth (c-section). This is surgery in which your baby is born through a cut that your doctor makes in your belly and uterus.

How do you know if you have scleroderma?

If you have any signs or symptoms of scleroderma, talk to your health care provider. To diagnose the condition, your provider checks your symptoms and your health history and may use these medical tests:

  • Physical exam to check for changes in your skin and other signs or symptoms
  • Blood tests to look for certain antibodies (cells in the body that fight off infections) that often are found in the blood of people with scleroderma
  • Skin biopsy to check a sample of your skin for a health condition
  • X-rays or CT scan (computed topography). X-rays use radiation to make a picture of your body on film. CT scans use special X-ray equipment and powerful computers to make pictures of the inside of your body.

How is scleroderma treated during pregnancy?

Right now, there’s no treatment that stops the body from making too much collagen. But providers use several medicines to treat scleroderma. Not all are safe to take during pregnancy. If you’re being treated for scleroderma before pregnancy, talk to your provider about the medicines you take before you try to get pregnant.

Some medicines used for scleroderma can cause birth defects if you take them during pregnancy. Birth defects are health conditions that are present at birth that change the shape or function of one or more parts of the body. They can cause problems in overall health, how the body develops, or in how the body works. Your provider may want to change your medicines before or while you’re pregnant.

Medicines used to treat scleroderma (mainly systemic scleroderma) include:

  • Calcium channel blockers. Medicines like Nifedipine (Procardia®) help blood flow in the fingers and lower blood pressure. Ask your provider if it’s safe to use these medicines during pregnancy.
  • Heartburn medications. Medicines like Omeprazole (Prilosec®) help with heartburn. Ask your provider if it’s safe to use these medicines during pregnancy.
  • Corticosteroids. Medicines like Prednisone (Sterapred®) can help reduce irritation and ease symptoms. If you take them for a long time, though, they can cause side effects, like weakened bones and cataracts (a clouding of the lens in your eye that can affect your vision). These medicines may increase the risk of birth defects called cleft lip and cleft palate when used early in pregnancy. Cleft lip and palate are birth defects in which a baby's upper lip or palate (roof of mouth) doesn’t form completely and has an opening in it. Tell your prenatal care provider right away if you take these medicines for scleroderma.
  • Immunosuppressives. These medicines are used to reduce the strength of a person’s immune system. When this happens, your body may not be able to fight off certain infections. These medicines are not safe to use during pregnancy. Examples of immunosuppressives include cyclophosphamide (Cytoxan®), methotrexate (Folex®, Mexate®, Rheumatrex®), azathioprine (Imuran®) and mycophenolate mofetil (CellCept®).
  • Angiotensin-converting enzyme (ACE) inhibitors. These medicines are used to treat high blood pressure and help prevent kidney problems. They are not safe to use during pregnancy. Examples are Captopril (Capoten®) and enalapril (Vasotec®). 
  • Medicines to lower high blood pressure in the lungs. Medicines like Bosentan (Tracleer®) should not be used during pregnancy. Tell your provider right away if you take these kinds of medicine.

If you’re pregnant and you have scleroderma, your health care providers closely check your pregnancy so they can quickly treat any scleroderma flares or other problems. If you have scleroderma, you may be treated by a:

  • High-risk obstetrician, a doctor who treats women with serious pregnancy complications
  • Rheumatologist, a doctor who treats disorders having to do with inflammation (redness and swelling) or pain in muscles and joints

Depending on the kind of scleroderma you have and your symptoms, you also may need medical care from a:

  • Dermatologist, a doctor who treats skin conditions
  • Nephrologist, a doctor who treats kidney conditions
  • Cardiologist, a doctor who treats heart conditions
  • Gastroenterologist, a doctor who treats problems of the digestive tract. The digestive tract is made up of organs and tubes that digest the food you eat.
  • Pulmonologist, a doctor who treats lung conditions


What causes scleroderma?

We’re not sure what causes scleroderma. You can’t catch it from another person. Possible causes include:

  • Immune system problems. Scleroderma is called an autoimmune disorder because the immune system may cause the body to make too much collagen. Autoimmune disorders are health conditions that happen when antibodies attack healthy tissue by mistake just about anywhere in the body.
  • Hormones. Hormones are chemicals made by the body. Women ages 30 to 55 have scleroderma 7 to 12 times more often than men. Because of this, some scientists think hormones may play a role in scleroderma. More research is needed to find out for sure.
  • Genes. Scleroderma isn’t passed from parent to child through genes. But a person may have certain genes that make him more likely than others to develop scleroderma. Certain viruses and things in the environment may trigger the disorder in people with certain genes. More research is needed to find out for sure.

More information

National Institute for Arthritis and Musculoskeletal and Skin Diseases

Last reviewed: May, 2013