Patient education: Sarcoidosis (The Basics)

What is sarcoidosis? — Sarcoidosis (also called "sarcoid") is a disorder that causes clusters of abnormal tissue to form in the body. These clusters are called "granulomas." If many granulomas form in an organ, the organ might not work normally. For example, granulomas in the lungs can cause breathing problems.

Sarcoidosis can affect many different organs. Often, it affects the lungs. But it can also affect the skin, lymph nodes (small, bean-shaped organs under the skin), eyes, nose, heart, and other body parts.

What are the symptoms of sarcoidosis? — Sarcoidosis causes different symptoms depending on which body part it affects. The symptoms are usually mild and go away on their own.

When it affects the lungs, sarcoidosis can cause:

●Cough

●Trouble breathing

●Chest pain

●Tiredness or weakness

●Fever

●Weight loss

When it affects the skin, sarcoidosis can cause a mild rash or painful bumps. Sometimes, the rash and bumps go away completely. Other times, they leave a scar.

Sometimes, sarcoidosis causes no symptoms even though it is damaging certain organs. For this reason, people with sarcoidosis might need to have tests to check for organ damage.

How do I know if I have sarcoidosis? — There is no single test that can tell if you have sarcoidosis. To diagnose it, doctors and nurses look at:

●Your symptoms and physical exam

●X-rays (or special X-rays called CT scans)

●Electrocardiogram (a test that measures the electrical activity in your heart)

●Lab work on tissue taken from your body (called a biopsy)

●Tests that can rule out other causes of your condition

Is there anything I can do to feel better? — Yes. These things can help:

●If you smoke, stop smoking. Even though smoking does not cause sarcoidosis, it can make your breathing worse.

●Get the flu vaccine every year. Talk to your doctor about whether you should have a pneumonia vaccine, too.

●Get regular check-ups with your doctor, which will include lab tests. You should also see an eye doctor at least once after you are diagnosed, and again if you have any new changes to your vision.

●Get regular exercise, and stay as active as you can.

How is sarcoidosis treated? — Doctors and nurses do not know what causes sarcoidosis, so there is no cure. But there are ways to treat the symptoms. If your symptoms are mild, you might not need treatment.

Steroid medicines can relieve the symptoms of sarcoidosis and prevent some of the damage it can cause. These medicines reduce inflammation. They work by shrinking the granulomas caused by sarcoidosis. Sometimes, people can use skin creams, eye drops, and inhalers with steroids in them. Other times, if their symptoms are more severe, they take steroid pills.

Even though steroid pills can help with the problems caused by sarcoidosis, they can also cause problems of their own. For instance, steroids can cause weight gain and mood swings, and make diabetes worse. For this reason, doctors and nurses try to lower the dose of steroids and take people off of them as soon as possible.

Medicines other than steroids can also treat the granulomas caused by sarcoidosis. The most common one is methotrexate (sample brand names: Rheumatrex, Trexall). Doctors often prescribe methotrexate so that steroid medicines can be decreased or stopped. They also use it for people who cannot take steroids or do not get better with steroids.

How will sarcoidosis affect my life? — Sarcoidosis usually goes away on its own or does not get worse. Most people with sarcoidosis can live a normal life. Sometimes, sarcoidosis does get worse, and people might need treatment on and off. Some people need to take medicine for several years.

It is rare for sarcoidosis to cause permanent organ damage. It is very rare for a person to die from sarcoidosis.

More on this topic

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Patient education: Sarcoidosis (Beyond the Basics)