Sarcoidosis 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.
The exact causes of sarcoidosis are not known. It is thought that sarcoidosis may be caused by a combination of genetics (family history) and environmental factors (things around you). Your risk of getting sarcoidosis may be increased if you are exposed to any of the following:
- Wood-burning stoves
- Silica (a mineral)
- Insecticides
- Mould
- Certain bacteria in your lungs
Although anyone can get sarcoidosis, it is more common in the following:
- Adults aged 20 and above (it is rare in children)
- Women
- African or northern European ethnicity
- Having a close relative with sarcoidosis
- Those regularly exposed to substances such as:
- insecticides, plant and animal dusts (e.g., farmers)
- vehicle exhaust and lubricant oils (e.g., automotive workers)
- infectious agents while working in close contact with people (e.g., healthcare workers, teachers, child care workers)
- silica, metal dusts (e.g., construction workers, metal workers, miners)
Sarcoidosis can cause many different signs and symptoms, which vary from person to person. Your symptoms depend on how long you have had sarcoidosis and the location and number of granulomas that you have.
Some people don’t have any symptoms from sarcoidosis. Sometimes sarcoidosis is diagnosed when your healthcare provider is 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.
Some people will get pulmonary hypertension, high blood pressure in the lungs.
To diagnose sarcoidosis, your healthcare provider will:
- Ask you about your symptoms
- Do a physical exam
- Check to see if your symptoms may be caused by another disease that causes similar symptoms
- Send you for tests
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. Many different tests may be needed to determine if you have sarcoidosis.
Tests that help diagnose sarcoidosis
Your healthcare provider 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.
- Electrocardiogram (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.
Your healthcare provider 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. 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 they 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 reduces inflammation (swelling). Talk to your healthcare provider 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 healthcare provider, dentist and eye doctor must watch you carefully. Your healthcare provider will send you for 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 infections. And it is very important to tell your healthcare provider 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 device that helps your heart beat in a steady rhythm.
The exact causes of sarcoidosis are not known. It is thought that sarcoidosis may be caused by a combination of genetics (family history) and environmental factors (things around you). Your risk of getting sarcoidosis may be increased if you are exposed to any of the following:
- Wood-burning stoves
- Silica (a mineral)
- Insecticides
- Mould
- Certain bacteria in your lungs
Although anyone can get sarcoidosis, it is more common in the following:
- Adults aged 20 and above (it is rare in children)
- Women
- African or northern European ethnicity
- Having a close relative with sarcoidosis
- Those regularly exposed to substances such as:
- insecticides, plant and animal dusts (e.g., farmers)
- vehicle exhaust and lubricant oils (e.g., automotive workers)
- infectious agents while working in close contact with people (e.g., healthcare workers, teachers, child care workers)
- silica, metal dusts (e.g., construction workers, metal workers, miners)
Sarcoidosis can cause many different signs and symptoms, which vary from person to person. Your symptoms depend on how long you have had sarcoidosis and the location and number of granulomas that you have.
Some people don’t have any symptoms from sarcoidosis. Sometimes sarcoidosis is diagnosed when your healthcare provider is 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.
Some people will get pulmonary hypertension, high blood pressure in the lungs.
To diagnose sarcoidosis, your healthcare provider will:
- Ask you about your symptoms
- Do a physical exam
- Check to see if your symptoms may be caused by another disease that causes similar symptoms
- Send you for tests
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. Many different tests may be needed to determine if you have sarcoidosis.
Tests that help diagnose sarcoidosis
Your healthcare provider 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.
- Electrocardiogram (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.
Your healthcare provider 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. 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 they 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 reduces inflammation (swelling). Talk to your healthcare provider 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 healthcare provider, dentist and eye doctor must watch you carefully. Your healthcare provider will send you for 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 infections. And it is very important to tell your healthcare provider 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 device that helps your heart beat in a steady rhythm.