Topic Overview

What is sarcoidosis?

Sarcoidosis (say “sar-koy-DOH-sus”) is a rare disease that creates tiny lumps of cells throughout the body. These lumps, called granulomas, are too small to see or feel. They can form anywhere on the inside or outside of the body and can cause permanent scar tissue. They often form in the lungs, lymph nodes, liver, skin, or eyes.

Sarcoidosis may affect how an organ works. For instance, if it’s in your lungs, you may be short of breath. For every 10 people who get sarcoidosis, 2 or 3 will have permanent lung damage. A small number of people may end up with chronic sarcoidosis, which can last for years.^{footnote 1}

No one can predict how sarcoidosis might affect you. Some people don’t have any symptoms at all. For more than half of the people who get it, sarcoidosis appears just for a short time and then heals itself—without any treatment.

What causes sarcoidosis?

No one knows for sure what causes sarcoidosis.

Medical experts say that sarcoidosis is most likely a disease of the body’s immune system.

It might also be a respiratory infection that happens when someone with certain genes comes into contact with things in the environment, like bacteria, viruses, chemicals, toxins, or allergens.

Young and middle-aged adults are the most likely to get sarcoidosis, but you can get it at any age. 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. Some of the most common symptoms include:

• Fever.
• Body aches.
• Skin problems.
• Swollen lymph glands.
• Shortness of breath.
• Painful joints.
• Numbness.

Sarcoidosis may lead to lung or heart problems.

It can also cause high calcium levels in the blood (hypercalcemia). This can lead to weakness, lack of energy, loss of appetite, and other symptoms.

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’ll need treatment even if you don’t have any symptoms.

Taking an oral corticosteroid such as prednisone is one of the most common ways to treat sarcoidosis. It works by reducing the inflammation caused by the disease.

Most people need to take prednisone for a year or more. Long-term use of prednisone, especially in high doses, can cause serious side effects. If you take prednisone, stay in close contact with your doctor to make sure that you find the lowest dose you need to control your disease.

Other medicines used to treat sarcoidosis include:

• Methotrexate, which may be used if the disease affects your lungs, eyes, skin, or joints.
• Hydroxychloroquine, which may be used if the disease affects your skin or brain or if you have a high level of calcium in your blood from sarcoidosis.

What can you do at home?

Even if you don’t have any symptoms, keep seeing your doctor for ongoing care. He or she 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:

• Take your medicines 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 good 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 feel sad, talk to your doctor. Many people with sarcoidosis often feel sad and may get depressed. There are lots of good treatment options out there, so there’s no reason to feel bad if you don’t have to.

Making lifestyle changes can help you manage your health. For example:

• Follow a healthy diet that includes a variety of fruits, vegetables, and whole grains. It also includes lean meats, poultry, fish, beans, and fat-free or low-fat milk or milk products.
• Drink plenty of fluids, enough so that your urine is light yellow or clear like water. 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 30 minutes on most days of the week. You also may want to swim, bike, or do other activities.