Frequently Asked Questions About Lupus
For a disease shared by 1.5 million people in the U.S. and 5 million people worldwide, surprisingly few people know about lupus. More than half of Americans surveyed have never heard of lupus or know little about it. 1,2 Here are answers to some frequently asked questions about lupus.
What is lupus?
Lupus is a chronic autoimmune disease. The immune system is supposed to fight off “foreign invaders,” like viruses, bacteria, and germs. In lupus, the immune system mistakes the body’s own tissues and cells as foreign. It attacks healthy tissue, causes inflammation and pain, and can damage any part of the body. Lupus is not a type of cancer or HIV (human immune deficiency virus). 3,4
The name “lupus” comes from the Latin word that means wolf. A 13th-century physician used the word to describe sores on the face in a pattern that resembled a wolf’s bite.3
What are the types of lupus?
Lupus has 4 different forms:3,5-6
- Systemic lupus erythematosus (often called SLE) accounts for about 70 percent of cases. In about half of these, lupus affects a major organ, such as the heart, lungs, kidneys, or brain.
- Cutaneous lupus – about 10 percent of cases. This type affects only the skin.
- Drug-induced lupus – about 10 percent of cases. High doses of certain medicines over months or years cause symptoms like systemic lupus. The most common medicines are treatments for irregular heart rhythm and high blood pressure. Symptoms usually stop when you stop taking the medications.
- Neonatal lupus – rare condition. The mother’s antibodies cause symptoms in the baby at birth. The symptoms usually go away after 6 months.
Who gets lupus?
Women account for 9 out of 10 adults with lupus. Most people who develop the disease are between 15 and 44 years old. Men and children tend to have more severe cases. Lupus is 2 to 3 times more frequent and more severe among black, Hispanic, Asian, and native groups of people than among white people around the world.7-8
What causes lupus?
Lupus is not contagious. You cannot catch it from another person.4 Doctors think that factors work together to cause lupus:9
- Genes – Most often, people with lupus do not have close family members with lupus. But family members often have other autoimmune diseases, such as arthritis. Also, the increased risk of lupus in nonwhite people, mentioned above, might be due to shared genes.
- Hormones – Researchers are looking at a possible role for the hormone estrogen in regulating the severity of lupus.
- Environment – Doctors think that something in the environment, such as a virus or a chemical, may trigger lupus in people prone to the disease or cause lupus to get worse.
What are the symptoms?
Lupus affects different people differently. About 50 percent of people with lupus get a butterfly-shaped rash across their cheeks and nose. Lupus can cause:4,6,10
- Skin rash
- Painful joints
- Extreme fatigue
- Hair loss
- Swelling in the hands, feet, or around the eyes
- Low-grade fever
- Sensitivity to sunlight or fluorescent light
- Chest pain when breathing deeply
- Decrease in reasoning and memory
Many people with lupus have heart disease, strokes, or diseases of the kidneys, lungs, or other internal organs.6,10 Lupus is erratic. When it flares, you have more symptoms or more severe symptoms. When it’s in remission, the symptoms decrease and you feel better. Triggers that can cause lupus to flare include:4,11
- Emotional stress, such as divorce or a death in the family
- Physical stress, such as surgery, pregnancy, infection, or injury
How is lupus diagnosed?
It’s hard to diagnose lupus because the symptoms are so varied and changeable. Also, symptoms may be due to other diseases. In a survey, more than half of people with lupus reported seeing 4 or more doctors before a correct diagnosis. It may take almost 6 years for diagnosis after the first symptoms.12
To help with diagnosis, the doctor asks about your medical history and symptoms. You may have blood tests to check for inflammation and immune system function. Urine tests can indicate how well your kidneys are working. The doctor may take a biopsy of your skin or other tissue to check for inflammation or damage.10
How is lupus treated?
There is no cure for lupus. Treating lupus is a team effort. The team often includes a rheumatologist and specialists for damaged organs.13 Some of the medicines may have serious side effects. The drugs may include:14,15
- Anti-inflammatories to reduce inflammation and pain
- Antimalarials to protect from rashes
- Biologics to help your immune system work correctly
- Anticoagulants to prevent blood clots
- Immunosuppressives to prevent your immune system from attacking your body
- Steroids to reduce inflammation
For some people with lupus, acupuncture, meditation, and biofeedback may relieve stress and pain. Talk with your doctor before using other alternative treatments, like herbal remedies. Some herbal remedies may not be safe for you.
What is the long-term outlook?
Lupus, or diseases caused by it, can lead to death. But improved treatments can help you live a normal life span. Research explores the causes of lupus and seeks better treatments with fewer side effects.6,16
For information about clinical trials in which you may take part, see:
- Lupus Clinical Trials at Lupus Research Alliance
- ClinicalTrials.gov from the US National Library of Medicine at the National Institutes of Health
How can I find support?
The Lupus Foundation of America National Network also has more than 150 local support groups, community resources, and referrals.
Who do you turn to first for emotional support? (choose up to three)