Lupus: Support and Survival

Definition of Lupus

Alternative names:
disseminated lupus erythematosus; SLE; lupus; lupus erythematosus


A chronic inflammatory autoimmune disorder that may affect many organ systems including the skin, joints, and internal organs.  In lupus, the body develops antibodies that react against a person's normal tissue, which can lead to inflammation, arthritis pain, tissue injury and major organ damage.

When the human body develops an infection, or is subjected to surgery or trauma, it develops antibodies to fight off the infection or trauma. Once the infection or illness is under control, the antibodies die off and the white cell count returns to normal.

In Lupus patients, the antibodies love fighting so much, they mutate and begin to fight not only "bad germs" but normal body cells as well. The body is fact begins to destroy itself.

Common signs and symptoms of disease that lupus sufferers experience can lead to a poor quality of life. Lupus can be mild but also can cause significant and potentially serious damage to organs such as the lungs, heart, kidney, and brain. The disease is characterized by flares of disease activity interspersed  with periods of improvement or remission.

Causes, incidence, and risk factors:

Normally the immune system controls the body's defenses against infection. In Systemic Lupus Erythematosus (SLE) and other autoimmune diseases, these defenses are turned against the body when antibodies are produced against its own cells. These antibodies fight against the body's blood cells, organs, and tissues, causing chronic diseases. The mechanism or cause of autoimmune diseases is not fully known.

The disease affects 8 times as many women as men. It may occur at any age, but appears mostly in people between the ages of 10 and 50 years. SLE may also be caused by certain drugs. When this occurs, it is known as drug-induced lupus erythematosus and is usually reversible when the medication is stopped.

The course of the disease may vary from a mild episodic illness to a severe fatal disease. Symptoms also vary widely with the individual and are characterized by remissions and exacerbation. At its onset, only 1 organ system may be involved. Additional organs may become involved later. The following organ system manifestations may be seen, but other manifestations are possible.


Almost all people with SLE have joint pain and most develop arthritis. Frequently affected joints are the fingers, hands, wrists, and knees. Death of bone tissue can occur in the hips and shoulders and is frequently a cause of pain in those areas.


A malar "butterfly" rash over the cheeks and bridge of the nose affects about half of those with SLE. The rash is usually worsened by sunlight. A more diffuse rash may appear on other body parts that are exposed to the sun. Other skin lesions or nodules can occur.


Most people with SLE have some deposits of protein within the cells (glomeruli) of the kidney; however, only 50% have lupus nephritis as defined by persistent inflammation in the kidney. They may eventually develop renal failure and require dialysis or kidney transplantation.

Nervous system:

Neurological disorders can affect up to 25% of those with SLE. Mild mental dysfunction is the most common symptom, but any area of the brain, spinal cord, or nervous system can be affected.
Seizures, psychosis, organic brain syndrome, and headaches are some of the varied nervous system disorders that can occur.


Blood disorders can affect up to 85% of those with SLE. Venous or arterial blood clots can form and are associated with strokes and pulmonary embolism. Often platelets are decreased, or antibodies are formed against blood clotting factors, which may cause significant bleeding. Anemia of chronic disease often develops at some point in the course of the disease.


Inflammation of various parts of the heart may occur as pericarditis, endocarditis, or myocarditis. Chest pain and arrhythmia's may result from these conditions.


Pleurisy, an inflammation of the lining of the lung, and pleural effusions, a fluid collection between the lung and its lining can occur as a result of SLE or infection. Chest pain and shortness of breath are frequently results of these disorders.




  • fever
  • fatigue
  • general discomfort, uneasiness, or ill feeling (malaise)
  • weight loss
  • skin rash
  • malar "butterfly" rash
  • sunlight aggravates skin rash
  • spotting of skin exposed to sunlight
  • sensitivity to sunlight
  • joint pain and swelling
  • arthritis
  • swollen glands
  • muscle aches
  • nausea and vomiting
  • pleuritic chest pain
  • seizures
  • psychosis

  • Additional symptoms that may be associated with this disease:

  • blood in the urine
  • coughing up blood
  • nosebleed - symptom
  • swallowing difficulty
  • skin color is patchy
  • red spots on skin
  • fingers that change color upon pressure
  • numbness and tingling
  • mouth sores
  • hair loss
  • abdominal pain
  • visual disturbance

  • Signs and Tests:

    The diagnosis of SLE is based upon the manifestations of at least 4 out of 11 typical characteristics of the disease.

    Tests to determine the presence of these disease manifestations may vary but will include some of the following:

  • antinuclear antibody (ANA) panel
  • characteristic skin rash or lesions
  • chest X-ray showing pleuritis or pericarditis
  • listening to the chest  with a stethoscope to reveal heart friction rub or pleural friction rub
  • urinalysis to show blood, casts, or protein in the urine
  • CBC showing a decrease in some cell types
  • kidney biopsy
  • neurological examination

  • This disease may also alter the results of the following tests:

  • WBC count
  • serum globulin electrophoresis
  • rheumatoid factor
  • protein, urine
  • protein electrophoresis - serum
  • mononucleosis spot test
  • ESR
  • cryoglobulins
  • Coombs' test, direct
  • complement component 3 (3C)
  • complement
  • antithyroid microsomal antibody
  • antithyroglobulin antibody
  • antimitochondrial antibody
  • anti-smooth muscle antibody

  • Treatment:

    There is no cure for lupus,  just management of the symptoms.


    The disease has multiple manifestations with variable severity, which determines individual treatment.


  • Mild disease (rash, headaches, fever, arthritis, pleurisy, pericarditis) requires little therapy.
  • Nonsteroidal anti-inflammatory medications (NSAIDS) are used to treat arthritis and pleurisy.
  • Corticosteroid creams (see Corticosteroids - topical - low potency) are used to treat skin rashes.
  • Antimalarial drugs (hydroxychloroquine) are sometimes used for skin and arthritis symptoms.
  • Sensitivity to light is treated by protective clothing, sunglasses, and sunscreen.
  • Severe or life-threatening manifestations (hemolytic anemia, extensive heart or lung involvement, kidney disease, central nervous system involvement) often requires treatment by specialists in the specific area. Corticosteroid therapy may be prescribed to control the various manifestations of severe disease.
  • Some health care professionals use cytotoxic drugs (drugs that block cell growth) in people who do not have a good response to corticosteroids.

  • Lifestyle Changes:

    The stress of illness can often be helped by joining a support group where members share common experiences and problems. Resting more becomes a necessity rather than an option.

    Expectations (prognosis):

    The outcome for people with SLE has improved over recent years. Many of those affected have mild illness. Women with SLE who become pregnant are often able to carry the pregnancy safely to term and deliver normal infants, provided severe renal or heart disease is not present, and the SLE is under treatment. The 10 year survival rate exceeds 85%. People with severe involvement of the brain, lungs, heart, and kidney have the worst prognosis in terms of overall survival and disability.


  • infection
  • renal failure
  • thrombocytopenia
  • hemolytic anemia
  • myocarditis
  • seizures

  • Contact the Lupus Foundation of America or the local Chapter that serves your area for more information about lupus, or the programs and services the LFA offers including support group information and physician referral.

    Lupus Foundation of America., Inc.
    1300 Piccard Drive, Suite 200
    Rockville, MD 20850-4303
    301-670-9292  800-558-0121

    Information gathered from :

    Searching for ways to deal with the depression, the frustrations, the questions about lupus, I joined a support group online.  LUPIES has been a wonderful gift.  I have learned more from the information I found on the support web site from other sufferers of Lupus than I did from my doctor.
    Thank you fellow Lupies!    May your days be pain free!

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