What Is Sarcoidosis?

Sarcoidosis is an inflammatory condition that produces lumps of cells (granulomas) throughout the body. These lumps of cells can occur anywhere but are most common in the lungs and lymph nodes. They also can affect the heart, eyes, skin, and other organs.

Most people with sarcoidosis require no treatment or short-term treatment. However, long-term problems may develop. In rare situations, they can be severe. Doctors are still learning what causes sarcoidosis and the best ways to treat it.

At University of Utah Health Cardiovascular Center, we’ve created a multidisciplinary Sarcoidosis Clinic to ensure that you get well-rounded, quality care. Our physician care team includes:

  • cardiologists (heart specialists) and
  • pulmonologists (lung specialists).

Our clinic provides comprehensive testing and specialized care from experts with extensive experience in managing this rare condition.

Personalized Care Plan for Sarcoidosis

A critical goal of testing is to discover what parts of your body are affected by sarcoidosis. After all your test results are available, your cardiologist and pulmonologist will create a personalized treatment and follow-up plan for you. They may discuss your care plan with other specialists, such as an ophthalmologist or dermatologist.

If sarcoidosis is limited to your heart, a cardiologist will lead your care moving forward. If it only affects your lungs, a pulmonologist will take the lead. Once a diagnosis is established, you will receive comprehensive care and follow-up through the multidisciplinary Sarcoidosis Clinic.

Depending on your symptoms, we may refer you to other specialists at U of U Health, including:

  • a dermatologist (skin specialist),
  • an ophthalmologist (eye specialist),
  • a neurologist (brain and nervous system specialist),
  • a rheumatologist (immune system specialist),
  • a hepatologist (liver specialist), or
  • a nephrologist (kidney specialist).

What Causes Sarcoidosis

Sarcoidosis occurs when your immune system overreacts to an allergen, infection, or chemical. As a result, your immune system begins to attack its own tissues. Over time, granulomas (lumps of cells) will build up and settle in different parts of your body. This can affect the normal function of your organs and cause damage.

Experts believe that genetics may play a role as well. Sarcoidosis can run in families and is more common in certain groups, such as people of African and northern European descent.

Types of Sarcoidosis

Sarcoidosis can affect one organ or multiple organs. The most common types of sarcoidosis include:

  • pulmonary sarcoidosis (lungs).
  • cardiac sarcoidosis (heart),
  • cutaneous sarcoidosis (skin),
  • hepatic sarcoidosis (liver),
  • musculoskeletal sarcoidosis (bones, muscles, and joints)
  • neurosarcoidosis (nervous system),
  • renal sarcoidosis (kidneys), and
  • ocular sarcoidosis (eyes).

Find a Sarcoidosis Specialist

How Common Is Sarcoidosis?

Sarcoidosis is rare. Each year, between five and 40 people in 100,000 are diagnosed with some form of the disease. It often occurs in people between the ages of 20 and 60.

Man grabs chest in pain

Sarcoidosis Symptoms

The symptoms and severity of sarcoidosis vary from person to person, depending on which organs are affected by the disease. Symptoms can go away completely, come and go, or last for years.

Sarcoidosis may begin with the following symptoms:

  • fatigue,
  • swollen lymph nodes,
  • weight loss, and
  • joint pain and swelling.

Organ-specific symptoms include:

  • Lungs — Persistent dry cough, shortness of breath, wheezing, and chest pain
  • Heart — Chest pain, shortness of breath, fainting, irregular heartbeat, and swelling caused by excess fluid
  • Skin — A rash on the shins or ankles, skin discoloration, and sores on the nose, cheeks, and ears
  • Eyes — Pain, burning, itching, tearing, and blurred vision

Sarcoidosis Diagnosis

Sarcoidosis is challenging to diagnose because symptoms vary and may mimic signs of other diseases. The multidisciplinary Sarcoidosis Clinic at U of U Health offers a thorough evaluation, diagnosis, and personalized treatment plan for you or your loved ones with sarcoidosis. 

During the initial appointment, you will meet separately with a cardiologist (heart specialist) and pulmonologist (lung specialist). Our providers will perform a physical exam that includes:

  • listening to your lungs and heart,
  • checking your lymph nodes for swelling, and
  • assessing any skin, eye, neurological, or musculoskeletal problems. 

At the end of the first appointment, you will sit down with your cardiologist and pulmonologist to discuss the next steps. Depending on your symptoms, they may recommend additional tests, which can include:

  • blood and urine tests,
  • cardiac magnetic resonance imaging,
  • chest computed tomography (CT),
  • chest X-ray (detects enlarged lymph nodes),
  • echocardiogram (assesses the function of the heart)
  • electrocardiogram (records the electrical signals of the heart),
  • positron emission tomography (helps visualize active disease), or
  • pulmonary function testing (shows how well the lungs are working).

Biopsies for Sarcoidosis

Our care team may recommend a biopsy (tissue removal) of the lungs or lymph nodes, or other tissue, to look for granulomas (lumps of cells). This will help us confirm a diagnosis of sarcoidosis. These types of biopsies are done on an outpatient basis by our well-trained providers.

We rarely perform heart biopsies for patients with suspected cardiac sarcoidosis because granulomas tend to occur in patches that are challenging to find, and can be missed during a heart biopsy.

Sarcoidosis Treatment

Controlling Inflammation

The go-to treatment for sarcoidosis is a course of corticosteroid medication to reduce inflammation. Other medications can be effective, including immune-suppressive drugs like methotrexate, used in combination with a corticosteroid or as single-drug therapy. Our care team will monitor your inflammation based on your symptoms and do follow-up imaging tests.

Treating Other Sarcoidosis-Related Problems

Sometimes sarcoidosis causes long-term problems. The most severe include scarring in your lungs, vision loss, kidney failure, and heart failure.

In rare situations, sarcoidosis can lead to advanced heart and lung diseases, such as:

Our specialists in the multidisciplinary Sarcoidosis Clinic will monitor your health and adjust your treatment plan as needed. We offer comprehensive treatment options for people with advanced heart and lung disease, including:

Exercising With Sarcoidosis

Research shows that exercise helps people with sarcoidosis experience an improved sense of well-being and quality of life. However, exercise may be challenging if your sarcoidosis symptoms include fatigue or affect major organs like the heart and lungs.Experts recommend that people with sarcoidosis find a type of exercise they enjoy and avoid overdoing it.

Options may include:

  • walking,
  • gentle stretching,
  • yoga,
  • Tai chi, or
  • household chores, such as gardening or vacuuming.

Couple walks in park

How Long Can You Live With Sarcoidosis?

Many people who get sarcoidosis recover without long-term effects. In others, the condition may last for years and lead to serious health problems. It’s vital for people with sarcoidosis to receive care from a multidisciplinary team of specialists who can provide an accurate diagnosis and comprehensive treatment.

How to Schedule An Appointment

Referrals are welcome but not necessary when making an appointment at the multidisciplinary Sarcoidosis Clinic at U of U Health. To make an appointment, call 801-396-9766.