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In the Spotlight

May 24, 2000

Lupus Erythematosus: Under Attack By Your Own Immune System

By Adam Brochert, MD
Personal MD.com Advisory Board

Systemic lupus erythematosus, SLE or lupus for short, is one of a group of diseases known as autoimmune disorders. The exact cause is usually unknown, though the disease primarily affects women of childbearing age. It can range in severity from mild to life threatening.

Lupus is classified as an autoimmune disorder which means that a person's immune system attacks his or her own body for poorly understood reasons. Other autoimmune disorders include rheumatoid arthritis, polymyositis and scleroderma. With lupus, the immune system can attack any organ in the body, and the prognosis often depends on what organs are involved and how severely they are affected.

The large majority of affected individuals are women between 16 and 45 years old, though persons of any age and sex can develop lupus.


What are the symptoms?

The initial symptoms of lupus are wide-ranging and thus often frustrating to patients and doctors alike because the initial symptoms may be so non-specific as to not suggest any particular diagnosis or treatment. The most common symptoms of lupus include:

  • fatigue
  • fever
  • anorexia
  • nausea
  • weight loss
  • joint pain and arthritis
  • muscle pain
  • facial or other skin rash, often made worse by sun exposure (commonly a "butterfly rash" that occurs over the nose and cheeks of the face)
  • hair loss
  • depression
  • confusion
  • headache
  • chest pain
  • dry eyes and/or dry mouth
  • repeated miscarriages

As you can see, this is a long list and several of the symptoms are quite common. Often, multiple symptoms must occur before a doctor becomes suspicious of lupus as the possible cause of a person's complaints.

There are also several blood tests that can be abnormal in lupus and raise suspicion of the condition. For example, unexplainable anemia or low blood count occurs frequently in lupus.

How is it diagnosed?

The diagnosis of lupus is not always straightforward. There is no exact test that makes the diagnosis. There is a degree of overlap between the different autoimmune disorders, but, an experinced doctor will usually be able to tell that some type of autoimmune disorder is present. Certain tests can detect abnormal antibodies that are secreted by the immune system when lupus occurs and these are often used to confirm the diagnosis of lupus.

Although lupus can affect just about any organ in the body, the overall prognosis is often related to the degree of kidney and brain involvement. Kidney damage is a common cause of disability and death in persons with severe lupus. Affected persons may need dialysis or a kidney transplant if their kidneys fail. Brain involvement may cause confusion, personality changes, seizures or even psychosis.

How is it treated?

Treatment for lupus may be again simple or complex depending on the severity of disease and response to initial treatment. Patients with mild disease may need only aspirin or ibuprofen to control their symptoms. However, many of the medications used for the treatment of moderate to severe lupus have multiple side effects. Some of the medications given to patients with lupus are also used in cancer chemotherapy. These medications suppress the immune system. This reduces the amount of inflammation and damage the immune system can cause the rest of the body. Unfortunately, this makes the person more susceptible to infections, another common cause of death in lupus patients.

One of the more common medications used, prednisone, is in a class called corticosteroids. Prednisone is fairly mild as far as lupus treatments are concerned, but can cause weight gain, diabetes, osteoporosis, depression and other problems. A medication called hydroxychloroquine is also effective for some aspects of lupus but may cause vision problems, rash or muscle inflammation.

Fortunately, death is a relatively rare result of lupus, with roughly 70 percent of persons still alive 20 years after the diagnosis is made. Often, however, the quality of life is severely reduced in those with moderate to severe disease and disability is frequent. Family support and outside patient support groups are, of course helpful to many with the disease.


Living With Lupus
Many physical and emotional issues confront people with lupus, both in the beginning and throughout the course of their disease. The most common issues include the following:
 
Fatigue: Fatigue is a chronic problem that is usually accompanied by joint pain and stiffness. It can affect many aspects of your daily life.

Changes in personal appearance:
You may experience changes in your personal appearance. Discoid lupus (a form of lupus) may cause sores, blotches or scarring on the face, arms, shoulders, neck or back. The medications for lupus can also sometimes change your appearance. For example, corticosteroids can cause weight gain, excessive hair growth or swelling. Some drugs may cause hair loss. These changes in the way you look can be emotionally challenging to deal with.

Changes in physical ability: Many people with lupus feel isolated because their fatigue and need to rest keep them from maintaining normal work and social schedules. You may feel frustrated if you can't participate in outdoor activities with family or friends because of sensitivity to the sun. There will be times when you may feel it is easier to stay home than to make plans and later cancel them because you are too tired or not feeling well.

Psychological effects of corticosteroids:
Corticosteroids are used to treat many of the symptoms of lupus that result from inflammation. Their use can cause anxiety, mood changes, forgetfulness, depression, personality changes and other psychological problems. You need to know about the possible side effects of these drugs while you are taking them. It is also important that your family and friends understand the effects of these drugs so that they can be supportive if you should experience any side effects.

Depression: You may feel sad or depressed at times in your struggle to control lupus or because of the medications you take. Good communication with your doctor and health care team, as well as with your family and friends, is important in helping you cope with these feelings.

Concern for the future: Because the future and course of your disease are unknown, planning for your job, your family and life in general can be difficult at times.

Family concerns:
Like you, your family can be overwhelmed about your diagnosis and may have a difficult time understanding and adapting to your disease. They may feel confused, helpless and afraid. Because of your physical limitations, traditional roles and responsibilities within the family may need to change. It is important that everyone talk openly and honestly with each other. It is also important that your family learns about your disease so they can better understand your physical and emotional condition and the changes in your family that may result.
 
Source: From LUPUS: A Patient Care Guide for Nurses and Other Health Professionals, National Institute of Arthritis and Musculoskeletal and Skin Diseases/National Institutes of Health

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