What is it?

What is systemic lupus erythematosus (lupus)?

Systemic lupus erythematosus (lupus) is a chronic (long-lasting) autoimmune disease that can affect many parts of the body, including the:

  • Skin.
  • Joints.
  • Heart.
  • Lungs.
  • Kidneys.
  • Brain.

Lupus happens when the immune system, which normally helps protect the body from infection and disease, attacks its own tissues. This attack causes inflammation and, in some cases, permanent tissue damage.

If you have lupus, you may have times of illness (flares) and times of wellness (remission). Lupus flares can be mild to serious,and they do not follow a pattern. However, with treatment, many people with lupus can manage the disease.

Who gets it?

Who gets systemic lupus erythematosus (lupus)?

Anyone can get lupus, but women are more likely to get the disease than men. Most often it happens in people between ages 15 and 45 years.  

Lupus is more common in African Americans and people of American Indian and Asian descent than in white people. If you have a family member with lupus or another autoimmune disease, you may be more likely to develop lupus.

What are the symptoms?

What are the symptoms of systemic lupus erythematosus (lupus)?

The symptoms of lupus are different for each person who has the disease. Symptoms may:

  • Be mild or more severe.
  • Affect one area of your body.
  • Affect many areas of your body.
  • Come and go.
  • Change over time.

Some symptoms happen when the disease causes inflammation in organs. Symptoms of lupus can include:

  • Arthritis, causing painful and swollen joints and morning stiffness.
  • Fevers.
  • Feeling tired often (fatigue).
  • Rashes.
  • Hair loss.
  • Sores, which are usually painless, in the nose and mouth.
  • Change of color in the fingers and toes – blue-purplish, white, or red – from cold and stress (Raynaud’s phenomenon).
  • Swollen glands.
  • Swelling in the legs or around the eyes.
  • Pain when breathing deeply or lying down.
  • Headaches, dizziness, depression, confusion, or seizures.
  • Stomach pain.

In some people with lupus, inflammation may lead to other problems with the kidneys, heart, or lungs.

What causes it?

What causes systemic lupus erythematosus (lupus)?

No one knows what causes lupus. Certain factors may trigger your immune system, causing the disease. These factors include:

  • Genes.
  • The environment (such as exposure to viral infections, sunlight, certain medications, and smoking).
  • Other influences related to the immune system.
Is there a test for it?

Is there a test for systemic lupus erythematosus (lupus)?

At this time, there is no single test to tell if you have lupus. Lupus can be difficult to diagnose because it has many symptoms that come and go. Also, lupus symptoms may be the same as symptoms of other disorders or diseases. When speaking to your doctor, be sure to include symptoms that you no longer have. Diagnosing lupus can include:

  • Your medical and family history and symptoms.
  • A complete physical exam.
  • Laboratory blood and urine tests.
  • A biopsy of the skin or kidney by taking a small sample of tissue to look at under a microscope.
How is it treated?

How is systemic lupus erythematosus (lupus) treated?

The goals of treatment for lupus are to:

  • Manage symptoms.
  • Prevent flares, and, if possible, put the disease into complete remission.
  • Prevent or slow organ damage.
  • Improve your quality of life.

Lupus is a chronic (long-lasting) disease, and there is no cure. However, treatments have improved a great deal, and doctors have more ways to manage the disease.

Treatments for lupus may include:

  • Medications, such as:
    • Anti-inflammatory drugs to help treat pain or fever.
    • Antimalarials, which are used to prevent and treat malaria, for treating fatigue, joint pain, skin rashes, and inflammation of the lungs caused by lupus.
    • Corticosteroids to help lower inflammation in the body.
    • Immunosuppressants to help curb the overactive immune system.
    • Certain biologic medications.
  • Alternative and complementary therapies, such as special diets, supplements, and acupuncture, but research has not shown if they help treat lupus.
Who treats it?

Who treats systemic lupus erythematosus (lupus)?

If you have lupus, you might see several types of doctors, including:

  • Rheumatologists, who treat rheumatic diseases such as arthritis and other inflammatory or autoimmune disorders.
  • Clinical immunologists, who specialize in immune system disorders.
  • Primary care providers, such as a family physician or internal medicine specialist.
  • Mental health professionals, who provide counseling and treat mental health disorders such as depression and anxiety.
  • Nephrologists, who treat kidney disease.
  • Cardiologists, who specialize in treating diseases of the heart and blood vessels.
  • Hematologists, who specialize in blood disorders.
  • Endocrinologists, who treat problems related to the glands and hormones.
  • Dermatologists, who treat skin problems.
  • Pulmonologists, who treat lung problems.
  • Neurologists, who treat disorders and diseases of the spine, brain, and nerves.
Living With It

Living with systemic lupus erythematosus (lupus)

Living with lupus can be hard, but a positive outlook is important. You can do several things to help you live with lupus:

  • Learn to recognize the warning signs of a flare so that you and your doctor might reduce or prevent them. Warning signs include:
    • Increased tiredness.
    • Joint swelling.
    • Pain.
    • Rash.
    • Fever.
    • Stomach pain.
    • Headache.
  • Eat a diet rich in fruits, vegetables, and whole grains.
  • Exercise to help keep your body strong; however, talk to your doctor before starting an exercise program.
  • If you smoke, quit.
  • Protect yourself from the sun. Wear a hat or long-sleeved shirts, and use sunscreen any time you go outside.
  • Reach out to online and community support groups.
  • Talk to your family and friends about your lupus to help them understand the disease.
  • Ask for help when you need it.
  • Spend some time doing activities you enjoy.
  • Lower your stress – try meditating, reading, or deep breathing.

Most people who have mild symptoms of lupus or whose disease is in remission can usually take part in the same life activities they did before they were diagnosed.  

Pregnancy and Contraception for Women With Lupus

Most women with lupus can have healthy pregnancies if the disease is under control. If you start to plan a pregnancy, talk to your doctor so you can be as healthy as possible before becoming pregnant. Find an obstetrician who has experience working with women who have lupus.

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