Sarcoidosis

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What is sarcoidosis?

Sarcoidosis is a condition in which groups of immune cells form small lumps called granulomas in multiple organs. Granulomas can develop anywhere in the body, but they commonly affect the lungs, skin, lymph nodes, and eyes. In many cases, granulomas go away on their own after 2 to 3 years. In some cases, however, granulomas can grow and clump together in an organ, causing inflammation and damage. Over time, this can affect the organ’s normal structure and function and lead to permanent scarring (fibrosis).

The cause of sarcoidosis is not known. The condition is thought to be associated with both a genetic predisposition and the immune system’s overreaction to viruses or bacteria, or an environmental trigger, such as an allergen or chemical.

Anyone can develop sarcoidosis, but it most often occurs in people of African or Northern European descent who are age 55 or older. More than 25,000 cases of sarcoidosis are diagnosed in the U.S. each year. African American women are the most commonly affected group in the U.S.

Sarcoidosis varies in how severe it is and how long it lasts:

  • You can have the disease without knowing it since mild cases cause few, if any, symptoms and the symptoms may be nonspecific, resembling those of other common illnesses.
  • You may have an acute illness that resolves on its own within a few years (remission) and it may or may not return.
  • You can have a chronic form of the disease that worsens over time.

According to the National Heart Lung and Blood Institute, more than half of those affected will go into remission within 3 years of diagnosis, and two-thirds will be in remission within 10 years.

Most people with sarcoidosis will not experience long-term health effects, but about one-third will have some degree of organ damage. Sarcoidosis can sometimes be fatal, primarily in people whose lungs or hearts are severely affected, and in rare cases it can cause blindness.

 

About Sarcoidosis

Signs and Symptoms

The severity of sarcoidosis and the signs and symptoms you experience depend upon the tissues and organs affected, and they can vary over time. You may have no symptoms or may have signs and symptoms that are similar to those of other conditions, such as:

  • Fever
  • Fatigue
  • Weight loss
  • Night sweats
  • Loss of appetite
  • Swollen lymph nodes
  • Joint pain and swelling

You may have certain signs and symptoms because specific organs are affected. Examples are listed below.

Lungs
The American Lung Association estimates that as many as 90% of those with sarcoidosis have lungs that are affected. Signs and symptoms can develop and worsen as lung tissues stiffen and scar tissue forms. Examples include:

  • Dry cough
  • Wheezing or difficulty breathing
  • Shortness of breath
  • Chest pain, tightness, or discomfort

Skin
Up to 25% of those with sarcoidosis have skin problems, including:

  • Sores on or near the cheeks, ears, nose, and eyelids
  • A raised, reddish, bumpy rash on the ankles or shins that may itch or be tender and warm
  • Discolored skin
  • Inflammation and lumps around scars

Eyes

  • Blurred vision
  • Sensitivity to light
  • Eye pain and itching
  • Burning and redness
  • Excessive tearing
  • Inflammation

Heart

  • Abnormal heart rhythm
  • Rapid heart rate
  • Chest pain
  • Signs and symptoms of congestive heart failure, such as swelling of the legs and ankles or shortness of breath and coughing or wheezing

Brain and Nervous System

  • Headaches
  • Weakness
  • Seizures
  • Decreased coordination
  • Tremors

Muscle and Bone

  • Pain
  • Joint stiffness

Other

Testing

The goals of testing are to diagnose sarcoidosis, determine which organs and tissues are affected, evaluate disease severity, and monitor its course over time. Testing is also used to rule out other conditions with similar symptoms as well as other conditions associated with granulomas, such as tuberculosis and some fungal infections.

Laboratory Tests

  • Biopsy—a tissue biopsy is the primary test used to confirm a diagnosis of sarcoidosis. A small sample of tissue is taken from one or more of your organs that are suspected to be affected by sarcoidosis. A pathologist will use a microscope to examine the tissue for characteristic changes in the structure of the tissue.
  • ACE (angiotensin converting enzyme)—this test may be used to help diagnose sarcoidosis, monitor disease activity, and monitor response to treatment. ACE is often elevated in people with sarcoidosis, but it may be increased with other conditions (e.g., diabetes, hyperthyroidism, infections associated with granulomas like tuberculosis and fungal infections).

Other laboratory tests may be helpful in assessing disease activity, detecting damage to individual organs, and ruling out other diseases that cause similar problems. These include:

  • Liver panel or CMP (comprehensive metabolic panel)—a group of tests used to evaluate liver and/or kidney function to determine if those organs are affected
  • CBC (complete blood count)—may be ordered to evaluate red blood cells and white blood cells
  • C-reactive protein (CRP), the preferred test, or ESR (erythrocyte sedimentation rate)—sometimes ordered to detect inflammation
  • Calcium—to detect elevated levels in the blood or urine; granulomas produce activated vitamin D, which causes the intestines to absorb more calcium. This may lead to elevated calcium in the blood and urine.
  • Vitamin D (1,25-dihydroxyvitamin D)—if the calcium is elevated in blood or urine, then a vitamin D test may be done to confirm that the increase is associated with a granuloma.
  • Cerebrospinal fluid (CSF) analysis—may be ordered when it is suspected that the brain or nervous system is affected
  • AFB testing, sputum cultures, and fungal tests—to help rule out other conditions that may affect the lungs and cause granulomas

Non-laboratory Tests

  • Chest X-ray—a common and useful test for helping to determine whether the heart or lungs are affected; granulomas may first be discovered when a person without symptoms of sarcoidosis has an X-ray for another reason.
  • Lung function tests are performed to find out whether sarcoidosis is affecting your lungs and determine its severity. (For more on these, see the National Heart, Lung, and Blood Institute website.)
  • Other imaging scans are sometimes ordered to help diagnose and evaluate sarcoidosis. These may include CT (computed tomography), MRI (magnetic resonance imaging) or PET (positron emission tomography) scans.

Visit RadiologyInfo.org for additional details on the imaging tests listed above.

  • EKG (electrocardiogram)—sometimes ordered when it is suspected that your heart is affected

Treatment

There is no way to prevent or cure sarcoidosis, but in many cases, it will go away on its own over time. The goals of treatment are to relieve symptoms, decrease inflammation, and minimize tissue and organ damage.

Treatment depends on the signs and symptoms you experience, how severe they are, whether vital organs are affected, as well as how severely they are affected.

  • If you have few or mild symptoms, you may not need treatment, but your condition should be monitored.
  • If you have moderate to severe symptoms and are at risk for tissue or organ damage, you are usually treated with corticosteroids such as prednisone. These anti-inflammatory medications may be given by mouth or applied directly to the area affected (e.g., cream on the skin, eye drops, an inhaler). Long-term use of corticosteroids can cause significant side-effects.

Other medications may include:

  • Drugs to decrease pain and inflammation, such as nonsteroidal anti-inflammatory drugs (NSAIDs)
  • Drugs that suppress the immune system, such as methotrexate
  • Hydroxychloroquine (an anti-malarial drug) may be useful if your skin or nervous system is affected, especially if you have increased blood calcium levels.
  • Tumor necrosis factor-alpha (TNF-alpha) inhibitors may be helpful in treating sarcoidosis that hasn’t responded to other treatments.

Most people can be successfully treated, but you may need to take medications for an extended period of time. Rarely, you may need an organ transplant if your lungs or liver have become severely damaged.

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Sources Used in Current Review

January 30, 2019. Mayo Clinic Staff. Sarcoidosis. Available online at https://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/syc-20350358. Accessed December 2019.

February 4, 2015. Cleveland Clinic. Sarcoidosis overview. Available online at https://my.clevelandclinic.org/health/diseases/11863-sarcoidosis-overview. Accessed December 2019.

May 30, 2019. U.S. National Library of Medicine. Sarcoidosis. Available online at https://medlineplus.gov/sarcoidosis.html. Accessed December 2019.

National Heart, Lung, and Blood Institute. Sarcoidosis. Available online at https://www.nhlbi.nih.gov/health-topics/sarcoidosis. Accessed December 2019.

Baughman RP, Field S, Ulrich C, et al. Sarcoidosis in America based on health care use. Annals of the American Thoracic Society. 2016;13:1244-1252. Available online at https://www.atsjournals.org/doi/pdf/10.1513/AnnalsATS.201511-760OC. Accessed December 2019.

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Sources Used in Previous Reviews

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