Lupus Health Center

Some people with lupus (systemic lupus erythematosus, or SLE) develop complications with internal organs, such as the kidney, heart or lungs.

Living with lupus

Most people with lupus are able to continue their usual daily activities. You may find that you need to cut back on your activity level, get help with child care, or change the way you work because of fatigue, joint pain, or other symptoms. You may find that you have to take time off from daily activities entirely.

Most people with lupus can expect to live a normal or near-normal life span. This depends on how severe your disease is, whether it affects vital organs (such as the kidneys) and how severely these organs are affected.

Lupus usually does not cause joint damage or deformity, which may happen in people who have rheumatoid arthritis, another autoimmune disease.

Medicines used to treat moderate to severe lupus have side effects. It can be difficult to tell what problems are part of the natural course of the disease and what problems are due to effects of medicines used to control the disease.

In the past, lupus was not well understood. People who had lupus died younger, usually of problems with vital organs. Now that the disease can be treated more successfully, life expectancy with lupus has increased significantly. Up to 90% of people with lupus live at least 5 years after diagnosis. Nearly 70% live at least 20 years after diagnosis.¹

Birth control, pregnancy, and lupus

Hormones such as estrogen and prolactin are sometimes used for hormone replacement therapy, birth control, and as part of fertility treatments. But studies show that women taking hormones do not have an increased risk of developing lupus or of having symptom flares.^{2, 3}

Lupus doesn't generally affect a woman's ability to conceive. However, if you are having a lupus flare or are taking corticosteroid medicines, you may have irregular menstrual cycles, making it difficult to plan a pregnancy.

It is not clear whether women have more lupus flares during pregnancy. But there does seem to be an increased risk to the developing fetus.⁴ The risks are decreased if the woman avoids becoming pregnant during a period of active lupus activity. So it's a good idea for women with lupus to use effective birth control when lupus is active.⁵ If you plan to have a baby or are already pregnant, it is very important that you and your health professional discuss how lupus may affect your pregnancy.

Kidney problems

Kidney problems affect many people with lupus. These problems usually don't cause any symptoms, although some people may notice swelling in their legs or ankles (due to fluid retention) that they have not had in the past. The first sign of kidney problems is often abnormal urinalysis findings, such as protein, blood, or white blood cells in the urine or granular or red cell casts (clumps of red blood cells or kidney cells) in the urine.