Conditions Basics

Sarcoidosis (say "sar-koy-DOH-sus") is a rare disease that creates tiny lumps of cells throughout the body. These lumps are called granulomas. They can form anywhere on the inside or outside of the body and can cause permanent scar tissue. They often form in the lungs. They may also form in the lymph nodes, liver, skin, or eyes. Sometimes sarcoidosis can cause high calcium levels in the blood.

Sarcoidosis may affect how an organ works. For instance, if it's in your lungs, you may be short of breath.

No one can predict how sarcoidosis might affect you. Some people don't have any symptoms at all. For some people, sarcoidosis appears just for a short time and then heals itself—without any treatment. For other people, sarcoidosis may cause long-lasting damage to the organ, and treatment may be needed.

What causes sarcoidosis?

No one knows for sure what causes sarcoidosis.

It may be caused by an abnormal response of the body's immune system. The trigger for this response is not known. Possible triggers include bacteria, viruses, chemicals, toxins, and allergens such as mould or mildew.

The disease doesn't spread from person to person.

What are the symptoms?

For some people, sarcoidosis may cause no symptoms at all. For others, it can cause a variety of symptoms depending on which part of the body or which organs it affects. Examples of symptoms include:

• Shortness of breath.
• Cough.
• Chest pain.
• Muscle weakness.
• Tiredness.
• Body aches.
• Weight loss.
• Fever.
• Swollen lymph nodes.
• Skin problems.
• Eye problems.
• Painful joints.

How is sarcoidosis diagnosed?

Sarcoidosis is often found in patients who don't have any symptoms of sarcoidosis but who have abnormal chest X-ray results.

Sometimes doctors can diagnose the disease after a physical or eye exam or by looking at a chest X-ray. Different tests like lab tests and lung tests can also help doctors make a correct diagnosis.

Your doctor may ask to take a sample of cells (biopsy) from the affected organ and examine them to make sure that the disease really is sarcoidosis. By looking at the biopsy, doctors can rule out other diseases that look like sarcoidosis.

How is it treated?

Not everyone who has sarcoidosis needs treatment. Sometimes the disease goes away on its own. If the disease affects certain organs—such as your eyes, heart, or brain—you may choose to have treatment even if you don't have any symptoms.

Taking a corticosteroid medicine is a common way to treat sarcoidosis. It works by reducing the inflammation caused by the disease.

If you take a corticosteroid, stay in close contact with your doctor to make sure that you find the lowest dose you need to control your disease. Long-term use of this medicine, especially in high doses, can cause serious side effects.

Other medicines may be used to treat sarcoidosis along with or instead of corticosteroids.

What can you do at home?

Even if you don't have any symptoms, keep seeing your doctor for ongoing care. Your doctor will want to check to make sure that the disease isn't damaging your organs. For example, you may need routine tests to make sure that your lungs are working well. And you should get your eyes examined regularly, even if you don't have vision problems.

Be sure to follow these steps at home:

• If you take medicine, take it exactly as prescribed. Call your doctor if you think you are having a problem with your medicine.
• Don't smoke. Smoking can make sarcoidosis worse. If you need help quitting, talk to your doctor about stop-smoking programs and medicines. These can increase your chances of quitting for good.
• Avoid dust, smoke, and fumes. They can harm your lungs.
• If you have sarcoidosis and are pregnant or planning a pregnancy, talk with your doctor about the risks involved. If you become pregnant, get regular prenatal care and regular sarcoidosis checkups during and after pregnancy. Some sarcoidosis medicines are considered safe to use during pregnancy, while others aren't recommended.
• If you think you have symptoms of depression, talk to your doctor. Symptoms include feeling sad or hopeless most of the time, or losing interest in activities that used to make you happy.

Having a healthy lifestyle can help you manage your health. For example:

• Eat a variety of healthy foods, such as vegetables and fruits, whole grain foods (like breads, cereals, pasta, and rice), protein foods (meat, fish, poultry, low-fat dairy, beans, tofu, and nuts).
• Drink plenty of fluids. If you have kidney, heart, or liver disease and have to limit fluids, talk with your doctor before you increase the amount of fluids you drink.
• If your doctor recommends it, get more exercise. Walking is a good choice. Bit by bit, increase the amount you walk every day. Try for at least 2½ hours of moderate to vigorous activity a week. You also may want to swim, bike, or do other activities.