Some people who have lupus (systemic lupus erythematosus, or SLE) develop complications with internal organs, such as the kidney, heart or lungs.
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.
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.
Hormones such as estrogen and prolactin are sometimes used for hormone therapy, birth control, and as part of fertility treatments. Studies do not agree on whether taking hormones increases the risk for lupus or for lupus symptom flares. If you are thinking about taking hormones, talk to your doctor about the risks and benefits of this treatment.
Lupus doesn't typically affect a woman's ability to conceive. But 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.footnote 1 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 who have lupus to use effective birth control when lupus is active. If you plan to have a baby or are already pregnant, it is very important that you and your doctor discuss how lupus may affect your pregnancy.
Kidney problems affect many people who have lupus. These problems usually don't cause any symptoms, but 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 a few cases, kidney problems are so severe that the kidneys stop working properly or fail completely. Depending on how severe kidney damage is, treatment can include strong medicines to control the lupus, kidney dialysis, or a kidney transplant.
Heart problems caused by lupus include:footnote 2
About 1 out of 3 people who have lupus develop inflammation of the tissue around the lungs.footnote 1 Sometimes this causes no symptoms. At other times it causes painful breathing, coughing, or chest pain that is worse with a deep breath (pleurisy). Many people with lupus have chest pain when they breathe. When this pain is not caused by pleurisy, it is commonly caused by inflammation of the chest muscle, cartilage, or ligaments, or of the joints that connect the ribs to the breastbone (costochondral joints). In these cases, the lungs may not be affected.
Less common lung problems with lupus include fever, cough, and inflammation of the lung tissue (acute lupus pneumonitis). Some people with lupus produce an antibody that causes their blood to clot more easily (antiphospholipid antibody). These people may be at risk for clots in the lung (pulmonary emboli). An unusual complication is the buildup of fluid in the lungs (pulmonary edema), caused by heart or kidney problems.
Blood-related problems are common in people who have lupus, but they do not always cause detectable symptoms. These problems, which in a few cases are severe and even life-threatening, include:
Neurological (nervous system) problems associated with lupus include:
The physical and emotional stress of coping with a chronic illness can make it difficult to maintain good mental health.
Problems in the digestive system are not common with lupus but may include:
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