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Information from Your Family Doctor
You Have Sarcoidosis: What Does This Mean To You?
Am Fam Physician. 1998 Dec 1;58(9):2055-2056.See related article on sarcoidosis.
What is sarcoidosis?
Sarcoidosis (say “sar-coy-doe-sis”) is a disease that may affect any organ or system in your body. If you have sarcoidosis, you may have no symptoms at all. Only small changes might show up on a chest x-ray, or you may have progressive failure of many organs in your body. The cause of sarcoidosis isn't known. It most commonly affects adults between 20 and 40 years of age, but it may occur at any age. Two thirds of people with sarcoidosis are younger than 40 years of age at the time of diagnosis. Sarcoidosis is more common in women than in men. It occurs more often in blacks than in whites. Sarcoidosis is not contagious. You can't catch sarcoidosis from another person with the disease.
What are the symptoms of sarcoidosis?
Symptoms of sarcoidosis vary, depending on which part of your body is affected by the disease. Symptoms may be widespread, or they may involve only one organ system. The lungs are the main target of the disease. The lungs are affected about 88 percent of the time. Most people have few or no breathing problems, but for some, breathing can be a problem. Sarcoidosis may also cause rashes or nodules (small bumps) to form on the skin. Skin lesions occur in one third to one half of people with sarcoidosis.
Sarcoidosis can affect the eyes, making it more difficult to see, but it rarely causes blindness. Eye symptoms usually include eye dryness but may also include swelling of the tear gland. Sarcoidosis may also affect the kidneys and sometimes may even end in kidney failure. Symptoms of kidney problems include inflammation, the formation of sarcoid “granulomas” (very tiny nodules or bumps) in the kidney and the formation of kidney stones made of calcium. Sarcoidosis can also cause the heart to beat abnormally. Inflammation of the heart muscle may occur, making the heart lose its ability to pump blood all through the body. This condition is called congestive heart failure.
Sarcoidosis involving bones is very uncommon. It occurs in 3 to 4 percent of people with this disease. The hands and feet are most often affected. You may have pain, swelling and joint stiffness. Sarcoidosis affects the liver in approximately 20 percent of people with the disease, at some time. The liver can become enlarged and the person can have abnormal liver tests and/or cirrhosis (although cirrhosis is rare). Fever is not often associated with sarcoidosis. Although the nervous system isn't usually affected, sar-coidosis can cause muscle weakness or paralysis, seizures, tremor, poor coordination, hearing loss, blindness or problems with walking.
Although almost any area of the body can be affected by sarcoidosis, remember that most people have few, if any, symptoms. Less than one half of people with sarcoidosis need any treatment for the disease.
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 one or more areas of your body. Your doctor will also have to rule out other diseases that may cause similar symptoms.
Your doctor may also order a blood test to determine the level of serum angiotensin converting enzyme in your blood. Usually it's high in people with “active” sarcoidosis. Knowing your level of angiotensin converting enzyme can help your doctor in following the course and “activity” of your disease and in checking 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 involved. 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?
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 involved; and (3) to decrease any symptoms you have. If your disease is mild, your doctor will probably check you on a regular basis and you won't need to take medicine.
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. Your doctor will probably treat sarcoidosis if it involves your kidneys, eyes, heart, nervous system, lungs (especially if breathing difficulties are getting worse), or if you have skin lesions that may bother you or if the sarcoidosis is very severe.
Other medicines are sometimes used to treat more severe forms of sarcoidosis.
What can people with sarcoidosis expect?
In many patients, the disease 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 ensure the best treatment plan for you and your general well-being.
This handout is provided to you by your family doctor and the American Academy of Family Physicians. Other health-related information is available from the AAFP online at http://familydoctor.org.
This information provides a general overview and may not apply to everyone. Talk to your family doctor to find out if this information applies to you and to get more information on this subject.
Copyright © 1998 by the American Academy of Family Physicians.
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