Key Points

• Sarcoidosis involves inflammation that produces tiny lumps of cells called granulomas in various organs in your body. These granulomas can grow and clump together, making many large and small groups of lumps. If many granulomas form in an organ, they may affect how the organ works and cause symptoms.
• Sarcoidosis can occur in almost any part of your body, although it usually starts in either your lungs or lymph nodes. It also often affects your skin, eyes, and liver.
• Sarcoidosis can also affect your spleen, brain, nerves, and heart.
• The course of sarcoidosis varies greatly among people. Sometimes, it's mild, and the symptoms may go away within a few years, even without treatment. But sometimes sarcoidosis slowly gets worse over the years and can cause permanent organ damage.
• The cause of sarcoidosis is unknown. Doctors think that it may result when your immune system overreacts to some kind of foreign substance. Scientists also think that your immune system acts this way only if you have inherited a certain mix of genes.
• Sarcoidosis affects men and women of all ages and races worldwide. It occurs mostly in people ages 20 to 40; African Americans, especially women; and people of Asian, German, Irish, Puerto Rican, and Scandinavian origin.
• Many people with sarcoidosis have no symptoms. Symptoms usually depend on which organs the disease affects. Symptoms from sarcoidosis in the lungs and lymph nodes include shortness of breath, a dry cough, wheezing, and enlarged and sometimes tender lymph nodes.
• Your doctor will determine if you have sarcoidosis by taking a detailed medical history and conducting a physical exam and several tests. The tests may include a chest x ray, blood and lung function tests, an electrocardiogram, magnetic resonance scan, and scans using radioactive elements.
• Your doctor may also insert a long, narrow, flexible tube with a light on the end, called a bronchoscope, through your nose or mouth into your lungs to look at your airways and to obtain samples of cells and other tissue for examination under a microscope. You most likely would have this procedure as an outpatient in a hospital under local anesthesia.
• Treatment for sarcoidosis depends on your symptoms and how severe they are, whether any of your critical organs (e.g., your lungs, eyes, heart, brain) are affected, and how they are affected.
• The main treatment for sarcoidosis is prednisone, a corticosteroid or anti-inflammatory drug. It's usually given for many months, sometimes even for a year or two. When used for a long time at high doses, prednisone can cause serious side effects, including diabetes, high blood pressure, depression, heartburn, acne, osteoporosis, cataracts, and glaucoma. It can also affect the body's production of certain hormones.
• Other drugs may be used to treat sarcoidosis if your condition gets worse while you are taking prednisone or you can't stand its side effects. Most of these other drugs are immune system suppressants that can cause serious side effects.
• Local therapy is the safest way to treat sarcoidosis. Localized drugs include eye drops, inhaled drugs for your lungs, and skin creams.
• Research is being done to improve the diagnosis and treatment of sarcoidosis. Scientists are studying drugs that are used for other conditions to see if they can help people who have sarcoidosis. These drugs include several strong immune system suppressants, tetracycline antibiotics, and thalidomide.
• Scientists also are conducting research to find out more about what causes sarcoidosis, why it seems to act differently in people of different races, and what genes are involved.
• If you have sarcoidosis, you should take steps to stay healthy, including don't smoke, avoid substances like dusts and chemicals that can harm your lungs, follow a healthy eating plan, and be as active as you can without straining yourself.
• Joining a patient support group may help you adjust to living with sarcoidosis.
• Your regular doctor may be able to diagnose and treat your sarcoidosis, but diagnosis and treatment by a doctor who specializes in sarcoidosis is recommended. These specialists are often found at major medical centers. Even if you want to be treated mainly by your regular doctor, you should see a doctor who specializes in the organs that are affected by your sarcoidosis at least once. He or she can work with your regular doctor to make sure you have a good treatment plan.
• If you are thinking about getting pregnant, you should talk to your doctor about how sarcoidosis may affect your pregnancy. Pregnancy usually doesn't affect the course of sarcoidosis, but it may flare up after delivery. You can continue taking corticosteroids during your pregnancy. None of the other drugs that are used to treat sarcoidosis are recommended for use then.
• If you are pregnant, you should have good prenatal care and sarcoidosis checkups during and after pregnancy.
• Regular followup care is important, even if you aren't taking medication, as new symptoms can occur at any time, and your condition can get worse slowly, without your noticing.