Got Lupus?

Then You Want 2 Know What is Lupus?

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.

  • Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
  • Research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
  • It is believed that 5 million people throughout the world have a form of lupus.
  • Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
  • Women of color are 2-3 times more likely to develop lupus.
  • People of all races and ethnic groups can develop lupus.
  • More than 16,000 new cases of lupus are reported annually across the country.

Symptoms of lupus vary, but some of the most common symptoms of lupus are:

  • Pain or swelling in joints
  • Muscle pain
  • Fever with no known cause
  • Red rashes, most often on the face
  • Chest pain when taking a deep breath
  • Hair loss
  • Pale or purple fingers or toes
  • Sensitivity to the sun
  • Swelling in legs or around eyes
  • Mouth ulcers
  • Swollen glands
  • Feeling very tired.

Less common symptoms include:

  • Anemia (a decrease in red blood cells)
  • Headaches
  • Dizzy spells
  • Feeling sad
  • Confusion
  • Seizures

Symptoms may come and go. The times when a person is having symptoms are called flares, which can range from mild to severe. New symptoms may appear at any time.

This may damage parts of the body, which include;

  • Joints
  • Skin
  • Kidneys
  • Heart
  • Lungs
  • Blood vessels
  • Brain

There are many kinds of lupus. The most common type, systemic lupus erythematosus, affects many parts of the body. Other types of lupus are:

  • Discoid lupus erythematosus—causes a skin rash that doesn’t go away
  • Subacute cutaneous lupus erythematosus—causes skin sores on parts of the body exposed to sun
  • Drug-induced lupus—can be caused by medications
  • Neonatal lupus—a rare type of lupus that affects newborns.

How Is Lupus Diagnosed?

There is no single test to diagnose lupus. It may take months or years for a doctor to diagnose lupus. Your doctor may use many tools to make a diagnosis:

  • Medical history
  • Complete exam
  • Blood tests
  • Skin biopsy (looking at skin samples under a microscope
  • Kidney biopsy (looking at tissue from your kidney under a microscope).

How Is Lupus Treated?

You may need special kinds of doctors to treat the many symptoms of lupus. Your health care team may include:

  • A family doctor
  • Rheumatologists—doctors who treat arthritis and other diseases that cause swelling in the joints
  • Clinical immunologists—doctors who treat immune system disorders
  • Nephrologists—doctors who treat kidney disease
  • Hematologists—doctors who treat blood disorders
  • Dermatologists—doctors who treat skin diseases
  • Neurologists—doctors who treat problems with the nervous system
  • Cardiologists—doctors who treat heart and blood vessel problems
  • Endocrinologists—doctors who treat problems related to the glands and hormones
  • Nurses
  • Psychologists
  • Social workers.

Your doctor will develop a treatment plan to fit your needs. You and your doctor should review the plan often to be sure it is working. You should report new symptoms to your doctor right away so that treatment can be changed if needed.

The goals of the treatment plan are to:

  • Prevent flares
  • Treat flares when they occur
  • Reduce organ damage and other problems.

Treatments may include drugs to:

  • Reduce swelling and pain
  • Prevent or reduce flares
  • Help the immune system
  • Reduce or prevent damage to joints
  • Balance the hormones.

In addition to medications for lupus itself, sometimes other medications are needed for problems related to lupus such as high cholesterol, high blood pressure, or infection. Alternative treatments are those that are not part of standard treatment. No research shows that this kind of treatment works for people with lupus. You should talk to your doctor about alternative treatments.

What Can I Do?

It is vital that you take an active role in your treatment. One key to living with lupus is to know about the disease and its impact. Being able to spot the warning signs of a flare can help you prevent the flare or make the symptoms less severe. Many people with lupus have certain symptoms just before a flare, such as:

  • Feeling more tired
  • Pain
  • Rash
  • Fever
  • Stomach ache
  • Headache
  • Dizziness.

You should see your doctor often, even when symptoms are not severe. These visits will help you and your doctor to:

  • Look for changes in symptoms
  • Predict and prevent flares
  • Change the treatment plan as needed
  • Detect side effects of treatment.

It is also important to find ways to cope with the stress of having lupus. Exercising and finding ways to relax may make it easier for you to cope. A good support system can also help. A support system may include family, friends, community groups, or doctors. Many people with lupus have found support groups to be very useful. Besides providing support, taking part in a support group can make you feel better about yourself and help you to keep a good outlook.

Learning more about lupus is very important. Studies have shown that patients who are informed and involved in their own care:

  • Have less pain
  • Make fewer visits to the doctor
  • Feel better about themselves
  • Remain more active.

Information gathered from the Lupus Foundation of America & National Institute of Health (National Institute of Arthritis & Musculoskeletal & Skin Diseases). Links: http://www.lupus.org/newsite/index.html & http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp

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