Sarcoidosis

What Is Sarcoidosis? Symptoms, Causes, Diagnosis, Treatment, and Prevention

Cathy Cassata
By Medically Reviewed by 
Reviewed:
Medically Reviewed

Sarcoidosis is a disease that leads to inflammation in the organs of your body.

The condition occurs when inflammatory cells grow in the organs, most commonly the lungs (called pulmonary sarcoidosis), lymph nodes, eyes, and skin. These tiny groups of cells are called granulomas.

Sarcoidosis heals on its own about 60 percent of the time.

When it doesn’t, treating its symptoms can help improve the function of the lungs and other organs. Many people will recover without lasting complications.

But for others, the disease is progressive and, in serious cases, an organ transplant may be necessary.

Signs and Symptoms of Sarcoidosis

Some people with sarcoidosis experience a gradual onset of symptoms over time, and symptoms that last for years, while others get symptoms suddenly, which then disappear quickly.

Still, others have no symptoms and only realize they have sarcoidosis when they get a chest X-ray for another reason.

General symptoms include fatigue, joint pain, and weight loss. But the signs and symptoms of sarcoidosis differ depending on which organ is affected by the condition.

When sarcoidosis appears in organs other than the lungs, you may also experience:

  • A rash of red bumps on your legs and other skin changes
  • Abdominal pain
  • Sore or itchy eyes
  • Swollen and tender lymph nodes
  • Joint pain
  • Anemia
  • Heart palpitations
  • Muscle weakness

When sarcoidosis appears in the lungs, you may experience:

  • Wheezing
  • Chest pains
  • Feeling short of breath
  • Coughing

Causes and Risk Factors of Sarcoidosis

The exact cause of sarcoidosis is unknown. But it’s thought that a combination of genetic predisposition and exposure to environmental triggers (such as dust or mold) may be responsible, and that sarcoidosis is the result of the immune system trying to ward off an unknown substance, most likely inhaled from the air.

When the immune system is functioning properly, inflammation occurs as immune cells attempt to fight off an “attack” from a foreign substance (from germs like bacteria and viruses). In someone who has sarcoidosis, however, those cells instead cluster together and form lumps (granulomas) in the organs.

Risk Factors

Anyone can develop sarcoidosis, but the following factors may increase your risk:

  • Age and Sex Sarcoidosis often occurs between the ages of 20 and 40 years. Women are more likely to develop sarcoidosis.

  • Genetics People of African descent and those of Scandinavian descent have a higher risk of sarcoidosis.

  • Having a Close Family Member With Sarcoidosis Researchers haven’t found a gene (or genes) linked to sarcoidosis, but studies have shown an elevated risk for those with a family history of the disease.

How Is Sarcoidosis Diagnosed?

Sarcoidosis can be difficult to diagnose because the symptoms often aren’t apparent during early stages or they resemble symptoms of other conditions.

There’s no single test to diagnose sarcoidosis.

After performing a physical exam, your doctor may order the following diagnostic tests and procedures to rule out other conditions, and to determine which organs are affected and how severely:

  • Blood tests
  • Chest X-ray
  • Neurological tests to look for problems with the nervous system due to sarcoidosis
  • Eye exams
  • Gallium scan, in which a radioactive material called gallium is used to look for inflammation, typically in the eyes or lymph nodes
  • Imaging tests, such as computerized tomography (CT) scans, magnetic resonance imaging (MRI), positron emission tomography (PET) scans, and ultrasounds, to look for granulomas
  • Lung function tests
  • Biopsy of the lungs, lymph node, skin, or other affected organs to check for granulomas
  • Electrocardiogram to check heart activity

  • Cardiac imaging (echocardiogram or MRI, if you have symptoms such as fainting or shortness of breath)

Prognosis of Sarcoidosis

There isn’t a cure for sarcoidosis, but it can go away on its own, and if you have no symptoms, or mild symptoms, you may not need treatment.

In about 60 percent of cases, the granulomas will disappear over a period of 2 to 5 years and the patient will recover. Patients who experience remission are unlikely to relapse.

If your sarcoidosis goes into remission, your doctor will continue to monitor you for a relapse, also called a flare. Most relapses happen within the first six months after treatment is stopped. The longer you have no symptoms, the less likely you are to relapse.

For some patients, the disease is progressive and requires ongoing treatment.

The disease mortality overall is around 5 percent. Advanced cases involving the heart and those that cause severe scarring in the lungs, which can cause respiratory failure, may require organ transplants.

Duration of Sarcoidosis

As noted above, a majority of people with sarcoidosis experience remission within two to five years. But for about 10 to 30 percent of people, the disease is chronic and progressive.

Monitoring and care may be lifelong.

Treatment and Medication Options for Sarcoidosis

There is no cure for the disease, but symptoms can still be treated.

Your doctor will develop a treatment plan based on your symptoms, which organs are affected, and how well your organs are functioning.

If organs such as your eyes, heart, or brain are affected, you’ll likely need treatment whether you have symptoms or not.

Medication Options

Your doctor may prescribe the following medications to treat sarcoidosis:

Corticosteroids These anti-inflammatory drugs are usually the first-line treatment, and can be applied directly to an affected area of the skin as a cream, taken in pill form, inhaled through your lungs, or given intravenously.

Immune System Suppressant Medications These reduce inflammation by suppressing your immune system. These include methotrexate, azathioprine, and leflunomide.

Tumor Necrosis Factor–Alpha (TNF-alpha) Inhibitors These can be helpful if other treatments for sarcoidosis aren’t working.

Antimalarial Medication Drugs such as hydroxychloroquine and chloroquine may help treat skin disease, nervous system issues, and elevated blood calcium levels.

Patients with advanced lung sarcoidosis may require oxygen therapy.

If your lungs, heart, or liver are severely damaged by sarcoidosis, your doctor may have no choice but to recommend an organ transplant, a lengthy and involved process.

Additional Therapies

Depending on what your symptoms are and which areas of the body are affected, the following treatments may be needed:

  • Physical therapy to improve strength and reduce fatigue
  • Pulmonary rehabilitation to ease respiratory symptoms
  • Pacemaker or defibrillator for heart arrhythmias

Prevention of Sarcoidosis

There’s no way to avoid getting sarcoidosis

, and there are no screening tests to assess who might develop it.

But if you have any of the risk factors for sarcoidosis, your doctor may recommend avoiding insecticides, mold, or other substances that may trigger the formation of granulomas.

Complications of Sarcoidosis

As a result of severe inflammation, sarcoidosis can cause serious, and sometimes life-threatening, damage to the organs it affects. These complications can include:

  • Blindness
  • Blood and bone marrow problems
  • Endocrine conditions, including hypercalcemia (too much calcium in your blood), diabetes insipidus (a disorder in which your kidneys pass excessive amounts of urine), and amenorrhea (lack of a menstrual period)
  • Heart complications, such as arrhythmia, heart failure, cardiac arrest, and cardiomyopathy
  • Kidney problems, such as kidney stones or kidney failure
  • Cirrhosis of the liver
  • Lung diseases, such as pulmonary hypertension and pulmonary fibrosis (scarring on the lungs)
  • Nervous system problems, including brain masses, meningitis, hydrocephalus, and nerve pain

Research and Statistics: Who Gets Sarcoidosis?

Though it can happen at any age, sarcoidosis often affects people between 20 and 40 years old.

Women are more likely to develop the disease.

Black people and people of Scandinavian descent have a higher incidence of sarcoidosis.

A review of research, based on people who were mainly white and of northern European ancestry, found the incidence of sarcoidosis to be around 11 patients per 100,000 a year, with a prevalence of 0.16 percent.

It also cited a study of data from more than 29,000 patients that found that African Americans had a higher incidence and prevalence compared with Caucasians, Hispanics, and Asians.

The prevalence in Black Americans was 0.14 percent and the incidence was 17.8 per 100,000 people. Caucasians had a prevalence of 0.05 percent and an incidence of 8.1. Hispanics and Asians had a prevalence of 0.02 percent and an incidence rate between 3 and 4 per 100,000.

Black Americans and Sarcoidosis

Black Americans are three times more likely to be diagnosed with sarcoidosis than white Americans, and tend to have more severe disease.

One report noted that Black patients in the United States with sarcoidosis experience more severe pulmonary disease, involvement of more organs, and an overall worse prognosis, with elevated rates of hospitalization and mortality.

The report suggests that this is likely due, in part, to decreased access to medical care, implicit bias on the part of healthcare providers, and patient perceived discrimination.
One way sarcoidosis can affect the skin is a condition called lupus pernio, in which skin sores appear on the face, especially on the nose, cheeks, lips, and ears. Lupus pernio mostly occurs in African Americans and can recur after treatment.

Related Conditions of Sarcoidosis

A number of conditions can develop as a result of poorly treated sarcoidosis (see Complications, above).

Some patients who experience a sudden onset of sarcoidosis have a form of the condition known as Lofgren’s syndrome. This affects the lymph nodes in the lungs and produces a skin condition (erythema nodosum) of red nodules under the skin, as well as fever and joint pain.

Lofgren’s syndrome often occurs in women between ages 30 and 40, and it usually goes away on its own within two years.

Resources We Love

National Heart, Lung, and Blood Institute

The NHLBI, part of the National Institutes of Health, offers comprehensive, up-to-date info about sarcoidosis, from symptoms, treatment options, and managing the disease, to the latest research and clinical trials.

Foundation for Sarcoidosis Research

This nonprofit seeks to find a cure for sarcoidosis and to improve patient care. The educational materials on their website can help you gain a better understanding of what sarcoidosis is, and FSR provides a number of helpful resources for living with this disease, from finding specialists, clinical trials, and support groups, to a podcast for individuals affected by sarcoidosis.

American Lung Association

In addition to providing a wealth of medical info about sarcoidosis, the ALA can help you find the support you may need to manage the disease. Their Lung Helpline (800-LUNGUSA) is open 7 days a week and staffed by nurses, therapists, and treatment specialists.

Additional reporting by Deborah Shapiro.

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