Dr. M.J. Bazos, MD. Patient Handout

About Your Diagnosis

Systemic lupus erythematosus (SLE) is a disease that causes inflammation in various parts of the body. The first signs of SLE may be joint pain or stiffness and/or fatigue. The joints most frequently affected are the hands, wrists, and knees. The fatigue can be severe. In other individuals a rash may occur on sun-exposed areas of the body, frequently on the face. This rash on the cheeks and nose is sometimes called a “butterfly rash.” Some individuals with lupus have “Raynaud’s phenomenon,” which can cause pain and discoloration in the fingers. Systemic lupus erythematosus may also cause inflammation in other parts of the body including the heart, lungs, blood vessels, kidneys, nervous system, and blood cells. Although certain hereditary and environmental factors may increase an individual’s risk of developing lupus, the exact cause of SLE is unknown. Research indicates that SLE occurs more frequently in close relatives. Systemic lupus erythematosus is not an infectious illness. In other words, you cannot “catch” it from another individual. Systemic lupus erythematosus affects about 1 in 2,000 individuals and occurs 5 times more frequently in women than in men. The disease usually occurs in individuals between the ages of 15 and 40 years. African Americans and individuals of Asian and Hispanic ancestory develop SLE more frequently than Caucasians. To diagnose SLE, a physician obtains a medical history, performs a physical examination, and orders laboratory tests and possibly x-rays. Laboratory tests may include an erythrocyte sedimentation rate (ESR), which measures inflammation in the body; a complete blood cell count (CBC), which measures the white and red blood cell counts and the platelet count (platelets are cells that help control bleeding); and an antinuclear antibody (ANA). The ANA is usually positive in individuals with SLE, but sometimes is positive in individuals without SLE. Therefore, this test is not 100% accurate in confirming a diagnosis of SLE. If the ANA is positive, the doctor may order an anti-DNA test, which is more specific for SLE. Urine tests are done to identify kidney problems.

Living With Your Diagnosis
Systemic lupus erythematosus affects each individual differently. Systemic lupus erythematosus of the joints may decrease your ability to write, open jars, and dress. If you have Raynaud’s phenomenon, your fingers may turn white and blue and become painful when exposed to cold. Some individuals have pleurisy (inflammation of the lining of the lungs), which can make breathing painful. If SLE affects the skin, you will need to avoid exposure to the sun. The fatigue of SLE may interfere with your activities at home and at work. If the kidneys are affected, you may have high blood pressure. Systemic lupus erythematosus may affect your memory and mood. This may cause stress or confusion in the family and at work. There is no cure for SLE. However, with earlier detection, improved medications, and comprehensive treatment, individuals with SLE can lead a full life.

Medications help decrease the inflammation that causes pain. Nonsteroidal anti-inflammatory drugs (NSAIDs) are often the first line of therapy. If these medications do not adequately control the disease, a physician may prescribe “disease-modifying” medications that can slow down the disease process. These medicines include hydroxychloroquine, methotrexate, azathioprine, and cyclophosphamide. Because these medications may take up to a few months to be effective, the doctor may prescribe prednisone. Prednisone is a strong anti-inflammatory medication that works quickly. All medications can cause side effects. The NSAIDs may cause stomach upset, ulcers, diarrhea, constipation, headache, dizziness, difficulty hearing, or a rash. Hydroxychloroquine may cause nausea, diarrhea, and a rash, and rarely may affect the eyes. Methotrexate and azathioprine may affect your blood, liver, and kidneys and may cause a rash. Cyclophosphamide may be given by mouth or through a vein and may affect your blood, kidneys, and bladder. Prednisone may cause skin bruising, high blood sugar, increased blood pressure, difficulty sleeping, cataracts, weight gain, and thinning bones.
Learning about SLE is essential because you may have it for a long time, maybe for the rest of your life. Exercise is important to maintain joint movement and muscle strength. Alternating periods of rest and activity helps to manage fatigue.

The DOs
• Take your medication as prescribed.
• Call your doctor if you are experiencing side effects from medications.
• Ask your doctor which over-the-counter medications you may take with your prescription medications.
• Exercise to maintain range of motion of your joints and muscle strength.
• Alternate periods of rest and activity to manage fatigue.
• Take your blood pressure regularly.

The DON’Ts
• Wait to see whether a possible medication side effect will go away on its own.
• Give up. If one medication doesn’t work for you, discuss with your physician other medicines that might help decrease your pain, stiffness, and fatigue.
• Continue an exercise program that causes pain and fatigue. Increased pain and fatigue after exercise usually indicate that the exercise program needs to be modified.

When to Call Your Doctor
• You experience side effects that you believe may be caused by your medications.
• The medication and other treatments are not helping the pain, stiffness, or fatigue.
• You believe you may need a referral to a physical or occupational therapist for exercise or joint protection, or a referral to a counselor to discuss family and social problems that have occurred because of this diagnosis.
• You are interested in vocational rehabilitation for job retraining.

The Lupus Foundation of America: