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OVERVIEW

What is sarcoidosis?

Sarcoidosis (say “sar-coy-doe-sis”) is a disease that can affect any organ or system in the body. People with sarcoidosis develop granulomas (small abnormal clumps of tissue) in certain parts of their body. If you have this disease, you may have no symptoms at all, or you may have serious problems with many different parts of the body.

The exact cause of sarcoidosis is unknown. Sarcoidosis is most common in adults between 20 and 40 years of age. It’s more common in women than in men. Worldwide, it occurs more often in African Americans and northern Europeans, especially people from Scandinavia. Sarcoidosis is not contagious. This means you can’t catch sarcoidosis from another person who has the disease.

SYMPTOMS

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. Most people who have sarcoidosis have few, if any, symptoms. Less than half of people who have this disease need any treatment. The most common symptoms of sarcoidosis involve the lungs, skin, eyes and liver.

Lungs

The lungs are the most commonly affected part of the body in people who have sarcoidosis. They may have a cough or chest pain. Some people have breathing problems, but most people have few or no breathing problems.

Skin

Sarcoidosis may cause skin problems, such as rashes or nodules (small bumps on the skin).

Eyes

Eye symptoms caused by sarcoidosis can make it hard to see, but they rarely cause blindness. Eye symptoms usually include dry eyes. However, sarcoidosis can also cause swelling of the tear gland, which makes the eyes water.

Liver

Sarcoidosis can cause a person’s liver to become enlarged. Some people have abnormal liver tests and/or a liver problem called cirrhosis. However, this is rare.

Symptoms are much less common in the other areas of the body, but may include the following:

Nervous system

Although the nervous system isn’t usually affected by sarcoidosis, the disease can cause muscle weakness or paralysis, seizures, tremors (shaking), poor coordination, hearing loss or problems walking.

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.

Bones

Symptoms involving the bones may include pain, swelling and joint stiffness. The hands and feet are most often affected.

Kidneys

A very small percentage of people who have sarcoidosis have symptoms involving their kidneys, such as kidney stones.

DIAGNOSIS & TESTS

How is sarcoidosis diagnosed?

To find out if you have sarcoidosis, your healthcare provider will perform a physical exam. They will take an X-ray and a biopsy (a tissue sample) from 1 or more areas of your body. Your healthcare provider will want to rule out other diseases that can cause similar symptoms. Your healthcare provider may also order a blood test to determine the level of a chemical called angiotensin‑converting enzyme (ACE) in your blood. Knowing your level of ACE can help your healthcare provider follow the course of your disease and check your response to treatment. Your healthcare provider will probably do other tests to see what areas of your body are affected by sarcoidosis. A test of your breathing may be performed, as well as an electrocardiogram (ECG) to check how well your heart works.

TREATMENT

How will my healthcare provider treat my sarcoidosis?

If your disease is mild, you may not need to take medicine. Your healthcare provider will probably treat sarcoidosis if it involves your kidneys, eyes, heart, nervous system or lungs (especially if breathing problems are getting worse). They will treat the disease if you have skin lesions that bother you or if your sarcoidosis is very severe. Your healthcare provider will try to do the following:

• Reduce any inflammation that may interfere with the way your organs work;
• Prevent permanent scarring of the lungs if they’re affected; and
• Decrease any symptoms you have.

Medicines called corticosteroids 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 who have sarcoidosis expect?

In many people, sarcoidosis gets better all by itself. Women and people who have less severe lung involvement usually do the best. If you have sarcoidosis, you should discuss your illness in more detail with your healthcare provider. You and your healthcare provider should work together as partners to create a treatment plan that is right for you.

QUESTIONS TO ASK YOUR HEALTHCARE PROVIDER

• How will sarcoidosis affect me?
• How is sarcoidosis treated?
• Will I need to take medicine for this condition?
• Can I do anything, such as changing lifestyle habits, to help prevent symptoms?
• Will my condition get worse?

Sources

Sarcoidosis: A Primary Care Review by MH Belfer, M.D., and RW Stevens, M.D. (12/01/98, http://www.aafp.org/afp/981200ap/belfer.html)