Sarcoidosis

We provide individualized care for complex disease affecting multiple organs

Sarcoidosis is a complex disease that starts with the forming of granulomas. These inflammatory cells appear in affected organs and often impair their function.

Most individuals will experience minimal to no symptoms. However, for some this will be a life-altering illness carrying a risk of severe organ damage. Organs commonly affected by sarcoidosis include the lungs, heart, eyes, liver, skin and nervous system.

What are symptoms of sarcoidosis?

The symptoms of sarcoidosis depend on the specific organs involved. Some individuals will have no symptoms at all while others will have severe symptoms. Some of the more common symptoms of sarcoidosis include:

  • Cough
  • Shortness of breath
  • Bumpy rashes
  • Enlarged lymph nodes (especially in the face and neck)
  • Fever
  • Fatigue

What causes sarcoidosis?

This is not clear and is an area of ongoing research. Recent studies have shown there may be an inherited genetic component that makes an individual more likely to develop sarcoidosis. An environmental trigger then activates the disease.

Some ethnic groups are at higher risk than others. Individuals with a family member who has sarcoidosis are at higher risk of being diagnosed with sarcoidosis.

Understanding Sarcoidosis

What are symptoms of sarcoidosis?

The symptoms of sarcoidosis depend on the specific organs involved. Some individuals will have no symptoms at all while others will have severe symptoms. Some of the more common symptoms of sarcoidosis include:

  • Cough
  • Shortness of breath
  • Bumpy rashes
  • Enlarged lymph nodes (especially in the face and neck)
  • Fever
  • Fatigue

What causes sarcoidosis?

This is not clear and is an area of ongoing research. Recent studies have shown there may be an inherited genetic component that makes an individual more likely to develop sarcoidosis. An environmental trigger then activates the disease.

Some ethnic groups are at higher risk than others. Individuals with a family member who has sarcoidosis are at higher risk of being diagnosed with sarcoidosis.

How is sarcoidosis diagnosed?

The diagnosis of sarcoidosis varies depending on the organs involved. We typically will discuss your medical history and potential risk factors and do a physical exam. In addition, we may need to do the following:

  • Blood tests: There is no single blood test to diagnose sarcoidosis. Blood tests can screen for specific abnormalities, like high calcium, that can occur with sarcoidosis, to look for involvement of other organs, and to help rule out diseases that mimic sarcoidosis.
  • Electrocardiogram (ECG): This test traces electrical activity of the heart and is frequently done to screen for possible sarcoid involvement of the heart.
  • Imaging: Most commonly imaging in sarcoidosis involves chest x-rays and computed tomography (CT) scans. Sometimes more advanced imaging like magnetic resonance imaging (MRI) or positive emission tomography (PET) scans will be required.
  • Biopsy: The site of the biopsy depends on the organs involved. Biopsies are used to look for the presence of granulomas. Many other diseases also cause formation of granulomas, and a biopsy can help rule out these other diseases.
  • Pulmonary function tests: For individuals with pulmonary sarcoidosis, pulmonary function testing or PFTs assess lung function. This includes how well airs moves in and out of the lungs, what the total capacity of the lungs is, and how well the lungs move oxygen into the blood for delivery to the rest of the body.

Diagnosis

How is sarcoidosis diagnosed?

The diagnosis of sarcoidosis varies depending on the organs involved. We typically will discuss your medical history and potential risk factors and do a physical exam. In addition, we may need to do the following:

  • Blood tests: There is no single blood test to diagnose sarcoidosis. Blood tests can screen for specific abnormalities, like high calcium, that can occur with sarcoidosis, to look for involvement of other organs, and to help rule out diseases that mimic sarcoidosis.
  • Electrocardiogram (ECG): This test traces electrical activity of the heart and is frequently done to screen for possible sarcoid involvement of the heart.
  • Imaging: Most commonly imaging in sarcoidosis involves chest x-rays and computed tomography (CT) scans. Sometimes more advanced imaging like magnetic resonance imaging (MRI) or positive emission tomography (PET) scans will be required.
  • Biopsy: The site of the biopsy depends on the organs involved. Biopsies are used to look for the presence of granulomas. Many other diseases also cause formation of granulomas, and a biopsy can help rule out these other diseases.
  • Pulmonary function tests: For individuals with pulmonary sarcoidosis, pulmonary function testing or PFTs assess lung function. This includes how well airs moves in and out of the lungs, what the total capacity of the lungs is, and how well the lungs move oxygen into the blood for delivery to the rest of the body.

How is sarcoidosis treated?

Sarcoidosis has no cure. It will sometimes resolve over time and not recur. Most patients do not need treatment for their sarcoidosis. When there is extensive organ involvement, treatments are needed to manage symptoms and prevent progressive organ damage.

Treatment will depend on the organs involved but may include medications. These include:

  • Inhaled steroids
  • Prednisone or other systemic steroids
  • Other immunosuppressants may be used such as methotrexate, azathioprine, leflunomide, hydroxychloroquine, mycophenolate, infliximab

Treatment

How is sarcoidosis treated?

Sarcoidosis has no cure. It will sometimes resolve over time and not recur. Most patients do not need treatment for their sarcoidosis. When there is extensive organ involvement, treatments are needed to manage symptoms and prevent progressive organ damage.

Treatment will depend on the organs involved but may include medications. These include:

  • Inhaled steroids
  • Prednisone or other systemic steroids
  • Other immunosuppressants may be used such as methotrexate, azathioprine, leflunomide, hydroxychloroquine, mycophenolate, infliximab

At IU Health, we bring together physicians across many specialties to provide patients sarcoidosis management. Our team approach with experts from many fields allows us to create individualized treatment plans for you. Our goal is to minimize long-term complications and improve your quality of life.

Our locations at IU Health University Hospital and Advanced Heart & Lung Care at IU Heath Methodist are the only sarcoidosis practices in the state recognized by the World Association of Sarcoidosis and Granulomatous Disorders. This demonstrates our commitment to providing patients with sarcoidosis with the best possible care.

Why choose IU Health for Sarcoidosis?

At IU Health, we bring together physicians across many specialties to provide patients sarcoidosis management. Our team approach with experts from many fields allows us to create individualized treatment plans for you. Our goal is to minimize long-term complications and improve your quality of life.

Our locations at IU Health University Hospital and Advanced Heart & Lung Care at IU Heath Methodist are the only sarcoidosis practices in the state recognized by the World Association of Sarcoidosis and Granulomatous Disorders. This demonstrates our commitment to providing patients with sarcoidosis with the best possible care.

Patient Stories for Sarcoidosis