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Systemic Lupus Erythematosus (SLE, or Lupus) and Pregnancy

What is lupus?

Systemic lupus erythematosus, also known as SLE, or simply lupus, is a disease that is characterized by periodic episodes of inflammation of and damage to the joints, tendons, other connective tissues, and organs, including the heart, lungs, blood vessels, brain, kidneys, and skin. The heart, lungs, kidneys, and brain are the organs most affected. Lupus affects each individual differently and the effects of the illness range from mild to severe. Lupus is an autoimmune disease. About 1.5 million people have a form of lupus. It is much more common in women of childbearing age, especially African-American women.

What are the symptoms of lupus?

The following are the most common symptoms of lupus. However, each individual may experience symptoms differently. Symptoms may include:

  • Malar rash. A rash shaped like a butterfly that is usually found on the bridge of the nose and the cheeks.

  • Discoid rash. A raised rash found on the head, arms, chest, or back.

  • Fever

  • Inflammation of the joints

  • Sunlight sensitivity

  • Hair loss

  • Mouth ulcers

  • Fluid around the lungs, heart, or other organs

  • Kidney problems

  • Low white blood cell or low platelet count

  • Raynaud phenomenon. A condition in which the blood vessels of the fingers and toes go into spasm when triggered by factors such as cold, stress, or illness.

  • Weight loss

  • Nerve or brain dysfunction

  • Anemia

The symptoms of lupus may resemble other medical conditions or problems. Always consult your doctor for a diagnosis.

How is lupus diagnosed?

In addition to a complete medical history and physical examination, lupus may be diagnosed by symptoms and by blood tests for antibodies specific for the disease. The course of the disease ranges from mild to severe and most people have periods of increased symptoms called flares.

How does pregnancy affect lupus?

Pregnancy may or may not increase the symptoms of, or change the course of, lupus. Flares may occur at any time in pregnancy or the postpartum period (after delivery), but are usually mild.

How does lupus affect pregnancy?

Lupus can affect pregnancy at any stage. It is not clear whether the severity of the disease or the type of medication causes problems. However, there are higher pregnancy risks associated with lupus, such as an increased rate of miscarriage. Later pregnancy loss may also be more likely. Pregnancy complications that may be increased in women with lupus include, but are not limited to, the following:

  • Miscarriage

  • Preterm delivery, especially with a lupus flare

  • Premature rupture of membranes (early breaking of the amniotic sac)

  • Gestational hypertension and preeclampsia (high blood pressure of pregnancy)

  • Intrauterine growth restriction (poor fetal growth)

  • Stillbirth

It is thought that high levels of antiphospholipid antibodies (antibodies that cause abnormal blood clotting) may be linked with stillbirth. Pregnancy loss may also be associated with the severity of lupus at the time of conception, or if lupus begins during pregnancy. It is also thought that kidney disease with lupus may play a role in pregnancy loss. Women who have had no flares in the six months before conception have the best chance of a good pregnancy outcome. 

A rare condition called neonatal lupus erythematosus (NLE) may affect babies of mothers with lupus. Symptoms may include:

  • Congenital heart block. A problem in the heart's electrical system that causes the heart to be slower than normal. This affects about 5 percent of newborns who have no other heart defect.

  • Skin rashes on the face, scalp, chest and upper back (these usually go away in the first year)

  • Blood abnormalities including anemia, low platelets, and lowered white blood cell count

Management of lupus during pregnancy

Because of the higher risks for pregnancy loss with lupus, mothers need close monitoring of the disease. More frequent prenatal visits are often needed.

Medications used to treat lupus may need to be changed (type and/or dosage), during pregnancy. Consult your doctor for more information.

Testing during pregnancy with lupus may include the following:

  • Blood tests for lupus (specific antibodies that help track the severity of the disease)

  • Monitoring for signs of high blood pressure in pregnancy  

  • Ultrasound. A diagnostic imaging technique that uses high-frequency sound waves and a computer to create images of blood vessels, tissues, and organs. Ultrasounds are used to view internal organs as they function, and to assess blood flow through various vessels used to monitor fetal growth and development.

  • Fetal heart monitoring (to check the fetal heart rate for signs of distress)

Women with lupus can increase their chances for a healthy pregnancy by getting early prenatal care and working with their health care providers in the management of their disease.