Dr. MJ Bazos MD, Patient Handout
What is sarcoidosis?
Sarcoidosis (say "sar-coy-doe-sis") is a disease that may affect any organ or system in the body. People with sarcoidosis may have no symptoms at all. Or they may have serious problems with many organs in their body. The cause of sarcoidosis isn't known. It is most common in adults between 20 and 40 years of age. Sarcoidosis is more common in women than in men. In the United States, it occurs more often in blacks than in whites. Sarcoidosis is not contagious. This means you can't catch sarcoidosis from another person who has the disease.
What are the symptoms of sarcoidosis?
The symptoms of sarcoidosis vary, depending on which part of the body is affected. Symptoms can involve several parts of the body, or only one. Although almost any area of the body can be affected, most people have few, if any, symptoms. Less than half of people with sarcoidosis need any treatment.
The most common symptoms involve the lungs, skin, eyes and liver.
The lungs are affected about 88% of the time. People with sarcoidosis may have a cough or chest pain. Some people have breathing problems, but most people have few or no breathing problems.
Between 30% to 50% of people with sarcoidosis have skin problems, such as rashes or nodules (small bumps on the skin).
About 25% of people with sarcoidosis have eye symptoms. These symptoms can make it hard to see, but they rarely cause blindness. Eye symptoms usually include dry eyes, but they can also include swelling of the tear gland that makes the eyes water.
Sarcoidosis affects the liver in approximately 20% of people at some point during the disease. The liver can become enlarged. Some people have abnormal liver tests and/or a liver problem called cirrhosis (although this is rare).
Symptoms are much less common in the other areas of the body.
Nervous system
Although the nervous system isn't usually affected, sarcoidosis can cause muscle weakness or paralysis, seizures, tremors (shaking), poor coordination, hearing loss, blindness or problems walking.
About 3% to 5% of people have symptoms that involve the heart. Sarcoidosis can cause the heart to beat abnormally. It can also cause the heart to be unable to pump blood properly. This is called congestive heart failure.
About 3% to 4% of people with sarcoidosis have symptoms involving the bones, such as pain, swelling and joint stiffness. The hands and feet are most often affected.
Only about 1% of people have symptoms involving their kidneys, such as kidney stones.
How is sarcoidosis diagnosed?
To find out if you have sarcoidosis, your doctor will perform a physical exam and take an x-ray and a biopsy (a tissue sample) from 1 or more areas of your body. Your doctor will rule out other diseases that can cause similar symptoms.
Your doctor may also order a blood test to determine the level of a certain chemical (called angiotensin-converting enzyme) in your blood. Knowing your level of angiotensin-converting enzyme can help your doctor follow the course of your disease and check your response to treatment. Your doctor will probably do other blood tests and take other x-rays to see what areas of your body are affected. A test of your breathing may be performed, as well as an electrocardiogram (ECG) to check how well your heart works.
How will my doctor treat my sarcoidosis?
If your disease is mild, you may not need to take medicine. Your doctor will probably treat sarcoidosis if it involves your kidneys, eyes, heart, nervous system or lungs (especially if breathing difficulties are getting worse), if you have skin lesions that bother you or if the sarcoidosis is very severe.
Your doctor will try: (1) to reduce any inflammation that may interfere with the way your organs work; (2) to prevent permanent scarring of the lungs if they're affected; and (3) to decrease any symptoms you have. Medicines called corticosteroids, such as prednisone, are used to treat sarcoidosis. How long you take the medicine depends on how severe the disease is and how well you respond to the medicine. Other medicines are sometimes used to treat more severe forms of sarcoidosis.
What can people with sarcoidosis expect?
In many people, sarcoidosis gets better all by itself. Women and people with less severe lung involvement usually do the best. If you have sarcoidosis, you should discuss your illness in more detail with your family doctor. As with most other illnesses, you and your doctor should work together as partners to create a treatment plan for you.