What Is Lupus?

Lupus is a chronic, autoimmune disease. In lupus, the immune system attacks healthy tissue, such as the skin, joints, kidneys, brain, and other organs. The symptoms and severity of the disease can vary widely between people.1

Lupus was first mentioned in the Middle Ages when a 12th Century doctor named Rogerius used the word “lupus” to describe the butterfly (malar) rash on the face common in some people with the disease. Then in 1872, the Hungarian dermatologist Moric Kaposi recognized lupus as a systemic disease.2

When most people talk about “lupus,” they mean systemic lupus erythematosus (SLE) since it is the most common of the 4 types of lupus. It accounts for approximately 70 percent of people diagnosed with lupus.1

Who gets lupus?

The Lupus Foundation of America estimates that 1.5 million people in the US, and 5 million worldwide, have a form of lupus. Lupus most often develops in women between ages 15-44. It is two to three times more common in women of color compared with Caucasian women. This includes African Americans, Hispanics/Latinas, Asians, Native Americans, and Pacific Islanders. Roughly 20 percent of people with lupus have a parent or sibling who also has lupus.1

What causes lupus?

Doctors do not know what causes lupus but believe a combination of factors increases a person’s risk of developing the disease. These triggers include:1,3

  • Genetics
  • Environment
  • Hormones
  • Certain medicines
  • Viruses and infections

What are the symptoms of lupus?

Symptoms of lupus may be dramatically different from one person to the next. Joint pain and swelling, especially in the fingers, hands, wrists, and knees, are the most common symptoms. Other common symptoms include:4

  • Fatigue (tiredness)
  • Headaches
  • Unexplained fever
  • Anemia
  • Edema (swelling)
  • Chest pain when taking a deep breath (pleurisy)
  • Rash
  • Sensitivity to light
  • Hair loss
  • Abnormal blood clotting
  • Fingers turning white or blue when cold (Raynaud’s phenomena)
  • Mouth or nose ulcers
  • Weight loss
  • Swollen lymph nodes
  • Muscle pain (myositis)
  • Brain fog

How is lupus diagnosed?

Lupus can be hard to diagnose since its symptoms mimic so many other diseases. Also, symptoms may come and go and be very different from person to person. On average, it takes 6 years for someone with lupus to be accurately diagnosed.

There is no one test to diagnose lupus. Doctors use a combination of your medical history, family history, blood tests, urine tests, and chest x-ray to diagnose lupus. You must exhibit 4 of the most common signs of the disease to receive an official diagnosis of lupus. Almost all people with lupus test positive for antinuclear antibodies (ANA). However, some healthy people with a family history of lupus also will test positive for ANA.4

How is lupus treated?

There is no cure for lupus but there are many treatments that help control symptoms, improve quality of life, and reduce long-term organ damage. The type of treatment your doctor recommends will depend on whether your symptoms are mild, moderate or severe, and what part of the body is affected. Treatment may include some combination of the following:4

  • Anti-malarial drugs
  • NSAIDs
  • Glucocorticoids
  • Immunosuppressants
  • Belimumab
  • Dehydroepiandrosterone
  • Plasmapheresis
  • Surgery
  • Lifestyle changes

In addition, certain treatments may be needed to target specific organs impacted by lupus. This may include:4

  • Blood pressure medicines or statins for cardiovascular issues
  • Antidepressants, antipsychotics or anti-seizure medicines for neurological symptoms
  • Transfusions or IV immunoglobulin for hematologic (blood) issues such as anemia or blood clots
  • Calcium, vitamin D and bisphosphonates for osteoporosis

What is the outcome for lupus?

While lupus cannot be cured, management of the disease has improved in recent years. Most people with mild forms of the disease live a normal life span. Many women with lupus can get pregnant and deliver a healthy baby. Since people who get a correct diagnosis in less than 6 months seem to experience fewer flares, lower healthcare costs, and a better quality of life, improving time to diagnosis is important. Only 10-15 percent of those with lupus die early due to complications of lupus. However, lupus is the 5th leading cause of death among black and Hispanic women ages 15 to 24.1,4,5

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Written by: Jessica Johns Pool | Last reviewed January 2020