If you have lupus, you probably have many questions. Lupus isn’t a simple disease with an easy answer. You can’t take a pill and make it go away. The people you live with and work with may have trouble understanding that you’re sick. Lupus doesn’t have a clear set of signs that people can see. You may know that something’s wrong, even though it may take a while to be diagnosed.
Lupus has many shades. It can affect people of different races, ethnicities, and ages, both men and women. It can look like different diseases. It’s different for every person who has it.
The good news is that you can get help and fight lupus. Learning about it is the first step. Ask questions. Talk to your doctor, family, and friends. People who look for answers are more likely to find them. This booklet can help you get started.
Lupus is an autoimmune (AW-toe-ih-MYOON) disease. Your body’s immune system is like an army with hundreds of soldiers. The immune system’s job is to fight foreign substances in the body, like germs and viruses. But in autoimmune diseases, the immune system is out of control. It attacks healthy tissues, not germs.
You can’t catch lupus from another person. It isn’t cancer, and it isn’t related to AIDS.
Lupus is a disease that can affect many parts of the body. Everyone reacts differently. One person with lupus may have swollen knees and fever. Another person may be tired all the time or have kidney trouble. Someone else may have rashes. Lupus can involve the joints, the skin, the kidneys, the lungs, the heart, and/or the brain. If you have lupus, it may affect two or three parts of your body. Usually, one person doesn’t have all the possible symptoms.
There are three main types of lupus:
Lupus may be hard to diagnose. It’s often mistaken for other diseases. For this reason, lupus has been called the “great imitator.” The signs of lupus differ from person to person. Some people have just a few signs; others have more.
Common signs of lupus are:
Other signs are mouth sores, unexplained seizures (convulsions), “seeing things” (hallucinations), repeated miscarriages, and unexplained kidney problems.
When symptoms appear, it’s called a “flare.” These signs may come and go. You may have swelling and rashes one week and no symptoms at all the next. You may find that your symptoms flare after you’ve been out in the sun or after a hard day at work.
Even if you take medicine for lupus, you may find that there are times when the symptoms become worse. Learning to recognize that a flare is coming can help you take steps to cope with it. Many people feel very tired or have pain, a rash, a fever, stomach discomfort, headache, or dizziness just before a flare. Steps to prevent flares, such as limiting the time you spend in the sun (and artificial indoor light) and getting enough rest and quiet, can also be helpful.
We don’t know what causes lupus. There is no cure, but in most cases lupus can be managed. Lupus sometimes seems to run in families, which suggests the disease may be hereditary. Having the genes isn’t the whole story, though. The environment, sunlight, stress, and certain medicines may trigger symptoms in some people. Other people who have similar genetic backgrounds may not get signs or symptoms of the disease. Researchers are trying to find out why.
Anyone can get lupus. But we know that many more women than men get lupus. African American women are three times more likely to get lupus than white women. It’s also more common in Hispanic/Latino, Asian, and American Indian women.
Both African Americans and Hispanics/Latinos 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 whites. For example, African American patients have more seizures and strokes, while Hispanic/Latino 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 44. These are roughly the years when most women are able to have babies. 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. With good care, most women with lupus can have a normal pregnancy and a healthy baby.
Go see a doctor. He or she will talk to you and take a history of your health problems. Many people have lupus for a long time before they find out they have it. It’s important that you tell the doctor or nurse about your symptoms. This information, along with a physical examination and the results of laboratory tests, helps the doctor decide whether you have lupus or something else.
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 doctor for a referral to a rheumatologist. In some cases, a dermatologist, a doctor who specializes in treating diseases that affect the skin, may be involved in diagnosis and treatment. No single test can show that you have lupus. Your doctor may have to run several tests and study your medical history. It may take time for the doctor to diagnose lupus.
Remember that each person has different symptoms. Treatment depends on the symptoms. The doctor 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 such as antimalaria drugs, corticosteroids, chemotherapy drugs, and biologic drugs, including a BLyS-specific inhibitor, are used. Your doctor will choose a treatment based on your symptoms and needs.
Always tell your doctor if you have problems with your medicines. Let your doctor know if you take herbal or vitamin supplements. Your medicines may not mix well with these supplements. You and your doctor can work together to find the best way to treat all of your symptoms.
You need to find out what works best for you. You may find that a rheumatologist has the best treatment plan for you. Other health professionals who can help you deal with different aspects of lupus include psychologists, occupational therapists, dermatologists, and dietitians. You might find that doing exercises with a physical therapist makes you feel better. The important thing is to follow up with your health care team on a regular basis, even when your lupus is quiet and all seems well.
Dealing with a long-lasting disease like lupus can be hard on the emotions. You might think that your friends, family, and coworkers do not understand how you feel. Sadness and anger are common reactions.
People with lupus have limited energy and must manage it wisely. Ask your health care team about ways to cope with fatigue. Most people feel better if they manage their rest and work and take their medicine. If you’re depressed, medicine and counseling can help.
It’s true that staying healthy is harder when you have lupus. You need to pay close attention to your body, mind, and spirit. Having a chronic disease is stressful. People cope with stress differently. Some approaches that may help are:
Exercising is another approach that can help you cope with lupus. Types of exercise that you can practice include the following:
People with chronic diseases like lupus should check with their health care professional before starting an exercise program.
Learning about lupus may also help. 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.
Women who want to start a family should work closely with their health care team; for example, doctors, physical therapists, and nurses. Your obstetrician and your lupus doctor should work together to find the best treatment plan for you.
Scientists are working to find out what causes lupus and how it can best be treated. Here are some of the questions they are trying to answer:
The National Institutes of Health (NIH) supports research on health and disease. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) supports research on the bones, connective tissue, joints, muscles, and skin. These are the parts of the body that can be affected by lupus. Research supported by the NIAMS is looking at these issues:
More information on research is available from the following resources:
If you need more information about available resources in your language or another language, please visit our website or contact the NIAMS Information Clearinghouse at [email protected].
Website: http://www.aaos.org (con información en español)
Website: https://www.aarda.org/ (con información en español)
The NIAMS thanks the following people and organizations for their contribution to the original version of this booklet: Arthritis Foundation, Metropolitan Washington Chapter, Lupus Foundation of Greater Washington, Washington, DC; Lupus Foundation of America, Washington, DC; Barbara Mittleman, M.D., Clifton A. Poodry, Ph.D., Laura Robbins, D.S.W., Cheryl Contreras, M.P.I.A., Patricia Fraser, M.D., M.P.H., M.S., Lori Harrison Port, M.P.H., Bobbie Drake-Saucer, Juan Rivera, Ph.D., Jorge R. Toro, M.D., and Lourdes Villalba, M.D. Special thanks go to our focus group participants and patients with lupus who reviewed this publication and provided valuable input.
Print out this page and use it to make notes to take to your doctor. Put a check mark beside the symptoms you have. Note when you experienced them.
|Symptom||Where?||When did you first notice?||How
|face and chest||2 years ago||Once or twice a month||9/17, 10/8, 10/23, 11/15|
|Red rash or color change|
|Painful or swollen joints|
|Chest pain with deep breathing|
|Unusual hair loss|
|Pale or purple fingers or toes|
|Sensitivity to sun|
You may be able to help scientists learn more about these conditions.
For information about research projects across the country, call:
Toll free: 877–22–NIAMS (226–4267)
Email: [email protected]
You could make a difference!
This publication contains information about medications used to treat the health condition discussed here. When this publication was developed, we included the most up-to-date (accurate) information available. Occasionally, new information on medication is released.
For updates and for any questions about any medications you are taking, please contact
Toll free: 888-INFO-FDA (888-463-6332)
For additional information on specific medications, visit [email protected] at http://www.accessdata.fda.gov/scripts/cder/drugsatfda. [email protected] is a searchable catalog of FDA-approved drug products.
For updates and questions about statistics, please contact the Centers for Disease Control and Prevention’s National Center for Health Statistics toll free at 800–232–4636 or visit its website at http://www.cdc.gov/nchs.