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Sarcoidosis

Sarcoidosis (“sar-koy-do-sis”) is a disease that causes swelling in the cells in different organs of your body. It usually affects your lungs. It can also affect other organs, like your skin, eyes, lymph nodes and brain.

With sarcoidosis, some of your blood cells bunch together to form tiny lumps called granulomas. The granulomas can form in different parts of your body. If they build up in your lungs they can stop them from working properly.

Causes


Doctors don’t know for sure what causes sarcoidosis. They think that sarcoidosis may be caused by a combination of genetics (family history) and environmental factors (things around you).  Doctors do know that being near certain things may boost your risk of getting sarcoidosis:

  • Wood-burning stoves
  • Silica (a mineral)
  • Insecticides
  • Mould
  • Certain bacteria in your lungs

Risk


Who gets sarcoidosis?

Anyone can get sarcoidosis. It’s more common in certain groups:

  • People between 20 – 40 years of age
  • Women
  • African-Americans and people with an African background
  • Northern Europeans and people with a Northern European background

People who work in certain jobs are more likely to get sarcoidosis:

  • Ship servicemen (in the navy)
  • Metal workers
  • Suppliers of building materials, hardware, and gardening materials
  • Teachers
  • Firefighters

Children can get sarcoidosis, but it’s rare.

Symptoms


Sarcoidosis can cause many different signs and symptoms. The symptoms are different in different people. Your symptoms depend on how long you have had sarcoidosis, and where the granulomas are, and how many there are.

Some people don’t have any symptoms from sarcoidosis. Their doctors find out that they have sarcoidosis when they are looking into other health problems.

Some symptoms of sarcoidosis are:

  • Feeling tired (fatigue)
  • Fever
  • Night sweats
  • Losing weight
  • Skin rash
  • Tender purple or red lumps on your skin, usually on your legs
  • Muscle aches, weakness, joint pain
  • Eye pain or redness

Sarcoidosis affects the lungs in about 90% of patients. When sarcoidosis affects your lungs, it is often called pulmonary sarcoidosis. Sarcoidosis of your lungs can give you these symptoms:

  • Wheezing (noisy breathing)
  • Short of breath
  • Dry cough
  • Tight feeling in the chest
  • Chest pain (this is less common)

20-25% of people with sarcoidosis get pulmonary fibrosis, permanent scarring of the lungs. Pulmonary fibrosis makes your lung tissue thicker and stiffer, so it is harder to breathe. Learn more about pulmonary fibrosis

Some people will get pulmonary hypertension, high blood pressure in the lungs.

Diagnosis


Doctors provide a diagnosis by listening to you explain your symptoms, examining you, doing tests and ruling out other disease that cause similar symptoms.

Sarcoidosis is hard to diagnose for two reasons:

  • Symptoms of sarcoidosis are similar to other diseases.
  • There is not one definitive medical test for sarcoidosis. Doctors must give many tests before they can diagnosis sarcoidosis.

Tests that help diagnose sarcoidosis

Your doctor will order tests to understand your symptoms and to see which organs are affected. Some common tests are:

  • Spirometry – a simple breathing test that measures how much and how fast you can move air out of your lungs.
  • X-rays – to check if there are granulomas or other changes in your lungs.
  • CT scan – an imaging test that takes a picture of your lungs, brain, or other areas of your body to check for changes.
  • Electrocardiograph (ECG) and 24 hour tape (Holter moniter) – tests that record the electrical activity of your heart to see if it is working properly.
  • Ultrasound scan of different areas of your body such as liver or spleen.
  • Blood tests – to check if your liver and kidneys are working properly, and to see if there are changes in your blood.

Treatment

How Will Doctors Treat My Sarcoidosis?

Your doctor will choose your treatment based on your symptoms.Whether you need treatment and what type of treatment you need depend on your signs and symptoms, which organs are affected, and whether those organs are working well.

Some people with sarcoidosis have no symptoms. Doctors call no symptoms “asymptomatic”. If you have no symptoms, you probably won’t need treatment. You do need to get regular check-ups, to make sure the sarcoidosis isn’t getting worse.

If you have mild sarcoidosis, you may not get any treatment. Your granulomas (lumps) may stop growing or shrink. Your symptoms may disappear on their own after a few years.

If you have moderate sarcoidosis, the granulomas (lumps) may stay the same over time: they won’t disappear and they won’t grow any bigger. Some people with moderate sarcoidosis have symptoms all the time, and take medicine every day. Other people with moderate sarcoidosis have symptoms that come and go. They only take medicine when the have symptoms.

If you have severe sarcoidosis, your symptoms can slowly get worse over the years. You can develop permanent organ damage. Treatment can help, but it can’t take away the damage to your lungs, skin, eyes or other organs. You will get more intensive treatment. If you have a lot of damage to your organs, you may need a transplant.

What Are the Main Treatments for Sarcoidosis?

Many people with sarcoidosis improve on their own, without treatment.

Corticosteroid

Corticosteroids is the main treatment for sarcoidosis. This medication reduce inflammation (swelling). Talk to your doctor and pharmacist about side effects of corticosteroids.

Other medication 

For people with severe sarcoidosis, doctors may prescribe medicines that may suppress (weaken) your immune system. These include, methotrexate, azathioprine (Imuran®, or a generic version), chlorambucil (Leukeran®).

Another medicine that is sometimes used to treat sarcoidosis is hydroxychloroquine (Plaquenil®, or a generic version). They are used to treat the hypercalcemia seen with sarcoidosis.

If you’re taking these medicines, your doctor, dentist and eye doctor must watch you carefully. Doctors will do blood tests regularly, and may also test your kidneys, heart and liver. You will have to watch your health carefully, and do your best to avoid germs. And you must tell your doctor right away if you notice any new or unusual symptoms.

Other Treatments for Sarcoidosis

  • People with severe sarcoidosis may get other treatments.
  • People with lung scarring (pulmonary fibrosis) may be prescribed oxygen to help them breathe easier. They breathe extra oxygen from a tank or a machine called an oxygen concentrator.
  • People with serious damage to their lungs, heart or kidneys may get a transplant. Transplants are rare. They are only given to certain patients.
  • People with heart problems may get a pacemaker put in their chest. A pacemaker is a machine that helps your heart beat in a steady rhythm.