WELCOME TO THE MYOSITIS COMMUNITY: This Patient-To-Patient Community is for discussions relating to Myositis which is an inflammation of skeletal muscles, which are also called the voluntary muscles. These are the muscles you consciously control that help you move your body. An injury, infection or autoimmune disease can cause myositis.
Lupus (LOO-puhss) is a chronic, autoimmune (aw-toh-ih-MYOON) disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and other germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”). In lupus, your immune system creates autoantibodies (AW-toh-AN-teye-bah-deez), which attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
When people talk about “lupus,” they usually mean systemic lupus erythematosus (ur-uh-thee-muh-TOH-suhss), or SLE. This is the most common type of lupus. Studies suggest that more than 16,000 new cases are reported annually across the country.
Although lupus can affect almost any organ system, the disease, for most people, affects only a few parts of the body. For example, 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.
Normally, lupus develops slowly, with symptoms that come and go. Women who get lupus most often develop symptoms and are diagnosed between the ages of 15 and 45. But the disease also can develop in childhood or later in life.
For most people, lupus is a mild disease. But for others, it may cause serious problems. Even if your lupus symptoms are mild, it is a serious disease that needs treatment. It can harm your organs and put your life at risk if untreated.
Although the term “lupus” commonly refers to SLE, this is only one type of the disease. There are other, less common types of lupus:
Anyone can get lupus. But 9 out of 10 people who have lupus are women. African American women are three times more likely to get lupus than white women. Lupus is also more common in Hispanic/Latino, Asian, and Native American women.
African Americans and Hispanics/Latinos tend to get lupus at a younger age and have more symptoms, including kidney problems. Lupus also tends to be more severe in these ethnic groups. For example, African Americans with lupus have more problems with seizures and strokes. Hispanic/Latino patients have more heart problems. Scientists believe that genes play a role in how lupus affects these ethnic groups.
Nine out of 10 people who have lupus are women. And lupus is most common in women of childbearing years. Having lupus increases your risk of developing other health problems that are common in women. It can also cause these diseases to occur earlier in life:
The cause of lupus is not known. More than one factor is likely to play a role in getting lupus. Researchers are looking at these factors:
The signs of lupus differ from person to person. Some people have just a few symptoms; others have more. Lupus symptoms also tend to come and go. Lupus is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).
Common signs of lupus are:
Less common symptoms include:
The times when your symptoms worsen and you feel ill are called flares. Flares tend to come and go. You may have swelling and rashes one week and no symptoms at all the next. Even if you take medicine for lupus, you may find that some things trigger your symptoms to flare. You may find that your symptoms flare after you've been out in the sun or after a hard day at work. Common triggers include:
Lupus can be hard to diagnose. It's often mistaken for other diseases. Many people have lupus for awhile before they find out they have it. If you have symptoms, tell your doctor right away. No single test can tell if a person has lupus. But your doctor can find out if you have lupus in other ways, including:
Together, this information can provide clues to your disease. It also can help your doctor rule out other diseases that can be confused with lupus.
|Symptom||Where?||When did you first notice?||How often?||Recent dates?|
|Example: rash||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|
|Fever with no known cause|
|Feeling very tired|
|Trouble thinking, memory problems, confusion|
|Chest pain with deep breathing|
|Sensitivity to sun|
|Unusual hair loss|
|Pale or purple fingers or toes|
|Sores in mouth or nose|
There is no known cure for lupus, but there are treatments. Your treatment will depend on your symptoms and needs. The goals of treatment are to:
Your treatment might include using medicines to:
Drugs play an important role in treating lupus. Most likely, the drugs prescribed to you will change often during your treatment. Types of drugs commonly used to treat lupus include:
You and your doctor should review your treatment plan often to be sure it is working. Tell your doctor about any side effects or if your medicines no longer help your symptoms. Tell your doctor if you have new symptoms. Never stop or change treatments without talking to your doctor first. Also, it is likely that you will need other drugs to treat conditions that are linked to your lupus — such as drugs to treat high blood pressure or osteoporosis.
Depending on your symptoms and/or if your organs have been hurt by your lupus, you may need to see special kinds of doctors. Start by seeing your family doctor and a rheumatologist (ROOM-uh-TOL-uh-jist), a doctor who specializes in the diseases of joints and muscles such as lupus.
Your rheumatologist may ask that you also see:
The best way to keep your lupus under control is by following your treatment plan and taking care of yourself. Take these steps:
Despite your best efforts to follow your treatment plan and take good care of yourself, there will be times when your lupus symptoms are worse. Being able to spot the warning signs of a flare can help you prevent the flare or make it less severe. Before a flare your symptoms might get worse, or you might get new symptoms, such as:
Contact your doctor right away if you suspect a flare is coming.
Dealing with a long-lasting disease like lupus can be hard on the emotions. Concerns about your health and the effects of your lupus on your work and family life can be stressful. Changes in the way you look and other physical effects of lupus and the medicines used to treat lupus can bring on body image issues and affect self-esteem. Your friends, family, and coworkers might not seem to understand how you feel. At times, you might feel sad or angry. Or, that you have no control over your life with lupus. But there are things you can do that will help you to cope and to keep a good outlook:
Women with lupus can safely become pregnant. If your disease is under control, pregnancy is unlikely to cause flares. But there are some important things you should know before you become pregnant:
Planning ahead and proper medical care are very important.
It may be hard to tell the difference. You may have symptoms from being pregnant that you mistake for a flare. Here are some examples:
Fortunately, recent studies show that flares are uncommon and tend to be mild during pregnancy. Some women with lupus find their symptoms improve during pregnancy. Still, it's important to report new symptoms to your doctor. This way, flares that do occur can be prevented or controlled.
Babies born to women with lupus have no greater chance of birth defects or mental retardation than do babies born to women without lupus. About 3 in 100 babies born to mothers with lupus will have neonatal lupus. In most cases, this goes away after 3 to 6 months and does not come back.
During your pregnancy, your OB will regularly check the baby's heartbeat and growth with ultrasound (a machine that takes pictures of your baby's organs). About 3 in 10 women with lupus will give birth too early. Although this can present a danger to the baby, most problems can be treated in a hospital that specializes in caring for premature newborns.
Breastfeeding is possible for mothers with lupus. Some medicines can pass through your breast milk to your infant. Talk to your doctor about whether breastfeeding is safe if you are using any medicines to control your lupus. Breastfeeding also can be very tiring because breastfed babies eat more often than formula-fed babies. If the demands of breastfeeding become too much for you, think about breastfeeding only some of the time. Pumping breast milk to be used later also might help.
Lupus is the focus of intense research. Studies are looking at:
Clinical trials are medical research studies to see whether new treatments are safe and effective. These studies help doctors learn how people respond to medicines and other new or improved treatments.
*Reprinted from womenshealth.gov.