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.
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.
Birth control, pregnancy, and lupus
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.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.2 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.
- Inflammation of the sac around the heart (pericarditis). This is the most common lupus-related heart problem.
- Hardening of the arteries that supply blood to the heart muscle. People with lupus are at increased risk for plaque deposits in arteries (atherosclerosis) that may cause coronary artery disease. They are also likely to develop plaque deposits at an earlier age than people who do not have lupus.
- Diseases of the heart valves. A few people with lupus may have slightly thickened heart valves, which makes them more susceptible to infections of the damaged valves (endocarditis), blood clots, or heart failure. Some people with damaged heart valves may need surgery to replace the valves.
- Inflammation of the heart muscle (myocarditis), which is uncommon but may lead to problems with the heartbeat or heart muscle. The heart may beat too fast, too slow, or irregularly.
About 1 out of 3 people who have lupus develop inflammation of the tissue around the lungs.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:
- Changes in red blood cells, which carry oxygen; white blood cells, which fight infection; and platelets, which help the blood clot.
- Anemia caused by the destruction of red blood cells (hemolytic anemia), low white blood cell count (leukopenia), or low platelet count (thrombocytopenia). Anemia can be caused by both lupus and the medicines used to treat it.
- Changes in organs related to circulation, such as the spleen or lymph nodes.
- Production of antibodies that attack certain blood-clotting factors, causing the blood to clot easily. These antibodies are produced by about 1 out of 3 people who have lupus.1 They can cause a condition, called antiphospholipid antibody syndrome, which can lead to mild or severe blood-clotting complications.
Nervous system problems
Neurological (nervous system) problems associated with lupus include:
- Mild memory loss, trouble concentrating, and errors in insight and judgment.
- Headaches, which are common but are usually related to stress and tension. Migraine headaches occur in many people who have lupus.
- Nervous system problems that cause vision disturbance, dizziness, muscle weakness in the face, arms, or legs, or loss of temperature or pain sensation in the feet, hands, arms, or legs (cranial or peripheral neuropathy).
- Seizures. They may be caused by problems with blood pressure, infections, or inflammation in blood vessels in the brain.
- Strokes, ranging from mild to severe.
Mental health problems
The physical and emotional stress of coping with a chronic illness can make it difficult to maintain good mental health.
- Many people with lupus become anxious, depressed, or both.
- Psychosis, a mental-behavioral disorder in which a person may have delusions (firmly held but false beliefs) or hallucinations (false perceptions) or both, is seen in some people who have lupus. It can be caused by the disease or by medicines such as tranquilizers, corticosteroids, or narcotic pain relievers.
- Manic behavior, including unusually high levels of energy and activity, difficulty sleeping, and irritability, can occur as a result of corticosteroid treatment for lupus. It is usually not serious and goes away when the medicine is discontinued.
Digestive system problems
Problems in the digestive system are not common with lupus but may include: