What is Lupus?
Systemic lupus erythematosus, referred to as SLE or lupus, is a chronic (long-term) disease that causes inflammation — pain and swelling. It is sometimes called the “great imitator,” because people often confuse lupus with other health problems due to its wide range of symptoms.
In addition to affecting the skin and joints, it can affect other organs in the body such as the kidneys, the tissue lining the lungs (pleura) and heart (pericardium), and the brain. Most patients feel fatigue and have rashes, arthritis (painful and swollen joints) and fever.
Lupus flares vary from mild to serious. Most patients have times when the disease is active, followed by times when the disease is mostly quiet — referred to as a remission. Yet, there is much reason for hope. Improvements in treatment have greatly improved these patients’ quality of life and increased their lifespan.
Ten-Part Video on Lupus
Video Series Topics
- Types of lupus and signs & symptoms
- Lupus flares
- Health disparities in lupus
- Patient-physician relationship
- Fatigue in lupus and the importance of adequate rest
- Pain and pain management for people with lupus
- Lupus fog, a common term for the difficulty in focusing and memory loss that affects some people with lupus
- Physical appearance and self-esteem
- Diet and exercise
How is lupus diagnosed?
Lupus can be hard to diagnose. There is no definitive test for lupus, and the broad range of symptoms can mimic other common diseases. The American College of Rheumatology provides guidelines for doctors in the diagnosis of lupus, including signs and symptoms. If your doctor finds that you have signs and symptoms of lupus, and can find no other reason for these, he/she may suspect lupus.
If lupus is suspected, you will need a series of blood tests to confirm the diagnosis. The most important blood test measures antinuclear antibodies (ANA) in the blood. If you have a positive ANA, you will likely undergo further testing to confirm, or rule-out lupus. These further tests include screenings for the presence of certain antibodies and proteins in the blood.
What is lupus?
Lupus is a chronic disease, meaning it is a long term disease that doesn’t go away, but has to be managed. Lupus affects the immune system and is called an autoimmune disease. The immune system’s job is to fight foreign invaders, like germs and viruses. But in autoimmune diseases, the immune system is out of control and mistakenly attacks healthy tissue.
Lupus can affect many parts of the body including joints, skin, kidneys, lungs, heart, and brain. It can vary from mild to severe, and usually alternates between periods of activity and periods of reduced activity, or even remission. Lupus is manageable. With proper diagnosis, treatment, and knowledge, people with lupus can live full, productive lives. In learning about lupus and how to manage it, we recommend that you start with the video on the left, a ten-part series on lupus.
How can I cope with lupus?
Start by building a strong health care team. Your rheumatologist or primary care physician will help you find the health care professionals you need. Your lupus health care team may include a psychologist, occupational therapist, physical therapist, dermatologist, and dietitian. It is important to follow up with your healthcare team on a regular basis, even when your lupus is quiet and all seems well. Ask your healthcare team about ways to cope with fatigue. If you’re depressed, medicine and counseling can help.
Build a solid support network of close family and friends. Consider support groups and counseling. Dealing with a long-lasting disease like lupus can be hard on your emotions. Getting enough rest and taking care of yourself is important. Don’t be afraid to ask for help. Practice setting limits and saying “no” when demands of others put your health in jeopardy.
Take care of yourself. Eat well. Get plenty of rest. Take your medications as prescribed. Pay attention to your body and slow down or stop before you’re too tired. Learn to pace yourself and spread out your work and other activities. Remember that fatigue is one aspect of the disease, and don’t blame yourself for it.
Stay active. Exercise is important for health and stress relief. Talk with your doctor about what type of exercise is appropriate for you. Stay involved in hobbies and social activities that you enjoy. Some people find meditation and yoga helpful in managing stress.
Learn about lupus. People who are well informed and take part in planning their own care report less pain. They also may make fewer visits to the doctor, have more self-confidence, and remain more active. Use the resources here at The Lupus Initiative as a starting point.
Will I need medication for lupus?
Your treatment will depend on your symptoms. Your healthcare provider may give you aspirin or a similar medicine to treat swollen joints and fever. Creams may be prescribed for a rash. For more serious problems, stronger medicines are used. Your healthcare team will choose a treatment based on your symptoms and needs.
Always tell your healthcare team if you have problems with your medicines. Let them know if you take herbal or vitamin supplements. Your medicines may not mix well with these supplements. You and your healthcare team can work together to find the best way to treat all of your symptoms. Read more about treatment here.
What type of doctor do I need to see?
A rheumatologist (ROOM-uh-TALL-uh-jist) is a doctor who specializes in treating diseases that affect the joints and muscles, like lupus. You may want to ask your regular healthcare provider for a referral to a rheumatologist. In some cases other specialists, such as a dermatologist, a doctor who specializes in treating diseases that affect the skin, may be involved in the diagnosis and treatment of lupus.
Who gets lupus?
Anyone can get lupus. But 9 out of 10 people who have it are women. African American women are 3 times more likely to get lupus than women of European descent. It is also more common in Hispanic American/Latina, Asian American, and Native American women.
Both African Americans and Hispanic Americans/Latinas tend to develop lupus at a younger age and have more symptoms at diagnosis, including kidney problems. They also tend to have more severe disease than women of European descent. For example, African American patients have more seizures and strokes, while Hispanic American/Latina patients have more heart problems. We don’t understand why some people seem to have more problems with lupus than others.
Lupus is most common in women between the ages of 15 and 45, the child-bearing years. Scientists think a woman’s hormones may have something to do with getting lupus. But it’s important to remember that men and older people can get it, too.
It’s less common for children under age 15 to have lupus. One exception is babies born to women with lupus. These children may have heart, liver, or skin problems caused by lupus, but with good care, most women with lupus can have a normal pregnancy and a healthy baby.
What causes lupus?
The immune system is the body’s defense system. A healthy immune system protects the body by making antibodies (blood proteins) that attack foreign germs and cancers. With lupus, the immune system misfires and produces antibodies that attack healthy tissue. As the attack goes on, other immune cells join the fight. This leads to inflammation and abnormal blood vessels (vasculitis). These antibodies then end up in cells in organs, resulting in further damage.
The exact reason for this autoimmune response is not clear. It most likely results from a mix of inherited tendencies and things in your environment. These include viruses, sunlight and drug allergies. People with lupus may also have an impaired process for clearing old and damaged cells from the body, which causes an abnormal immune response.
This information is provided for general education only. Individuals should consult a qualified health care provider for professional medical advice, diagnosis and treatment of a medical or health condition.
This educational resource on lupus and health disparities was developed and produced by The Lupus Initiative® in partnership with the U.S. Department of Health and Human Services, Office of Minority Health, The Lupus Initiative Consortium and a host of experts in rheumatology, health disparities and lupus research – many of whom are named below. Others, not named here, and members of The Lupus Initiative Consortium, provided feedback at every stage of development which was integral to the quality of these materials. We hope you will use and share them liberally.
Lupus What You Should Know: Patient DVD
Contributors and Editors
Cristina Drenkard, MD. Assistant Professor of Medicine, Division of Rheumatology, Emory University School of Medicine, Assistant Professor of Epidemiology, Emory University Rollins School of Public Health.
S. Sam Lim, MD, MPH. Associate Professor of Medicine, Division of Rheumatology, Emory University School of Medicine.
Kim Schofield. Emory University School of Medicine, Grady Hospital Lupus Clinic.