Sarcoidosis

Sarcoidosis is a rare inflammatory disease that can occur in almost any organ. It affects the lungs (pulmonary sarcoidosis) in 90 percent of patients. Pulmonary sarcoidosis is characterized by small patches of inflamed cells known as granulomas that form on the lungs’ air sacs (alveoli), breathing tubes (bronchioles) or lymph nodes. Though there is no definitive cause or cure for sarcoidosis, most people respond well to minimal treatment. Granulomas typically heal and disappear on their own within one or two years. But for certain patients, sarcoidosis is a long-lasting and debilitating disease. Pulmonary sarcoidosis may develop into pulmonary fibrosis – where lung tissue becomes scarred or fibrotic, making breathing difficult and affecting the ability of the lungs to circulate oxygen. It can also lead to bronchiectasis, a lung disease in which pockets form in the air tubes of the lung and become infection sites.

Sarcoidosis can be difficult to diagnose as symptoms do not appear in the early stages and when they do, can mimic other diseases. The Lung Center at Brigham an Women’s Hospital provides specialized services for patients with sarcoidosis, including the latest diagnostic technology.

For those rare patients with advanced disease, our Lung Transplant Program gives patients a second chance at life.

What are the risk factors for sarcoidosis?

Factors contributing to an increased risk of developing sarcoidosis include:

Ages 20 to 40
More common in women than men
African American: sarcoidosis may be more severe and likely to recur
Northern European Caucasian, especially Scandinavians
Family history

What are the symptoms of sarcoidosis?

Sarcoidosis often begins with these general symptoms:

Fatigue
Fever
Swollen lymph nodes
Weight loss

When sarcoidosis appears in the lungs (pulmonary sarcoidosis), patients may experience:

Dry cough
Shortness of breath
Mild chest pain

How is sarcoidosis diagnosed?

Because there is no one feature of the disease and no exclusive test, sarcoidosis can be challenging to diagnose. Symptoms also often mimic those of other chronic infections or more serious diseases. To effectively diagnose sarcoidosis, your BWH thoracic surgeon may conduct the following diagnostic tests and procedures:

Medical history and physical exam
Blood tests analyze the amount of carbon dioxide and oxygen in the blood.
Chest X-ray, radiation energy produces images of internal tissues, bones and organs
Pulmonary function tests measure the lungs’ ability to move air into and out of the lungs.
Bronchoscopy, a thin, flexible tube with a camera inserted down the throat and into the lung to examine tissue. Samples (biopsies) and lung washings (lavage) that contain lung cells can be done through the bronchoscope.
Bronchoalveolar lavage, a procedure in which a sterile saline solution is put into the lungs through a bronchoscope and suctioned out to obtain a sample from the smallest airway.
Biopsy, a test in which a small piece of abnormal tissue is taken out and checked under a microscope.
Cervical mediastinoscopy with biopsy, a lighted instrument (mediastinoscope) is inserted in the space in the chest between the lungs (mediastinum) under anesthesia, and tissue is taken from any unusual growth or lymph nodes. This is usually performed as a day surgery procedure.
Endobronchial ultrasound uses sound waves to create pictures of the insides of the airway and direct a needle biopsy of the abnormal lymph node.
Mediastinoscopy: Most patients with sarcoidosis have swollen mediastinal lymph nodes. They can be biopsied during mediastinoscopy.
Video-assisted thoracic surgery (VATS), a minimally invasive procedure that involves the insertion of a thoracoscope (a tiny camera) and surgical instruments into small incisions in the chest without any spreading of the ribs. This minimally invasive surgery approach allows patient to experience less pain and a quicker recovery while providing a definitive diagnosis. It is performed to obtain a biopsy of an abnormal lung where sarcoidosis is suspected.

What is the treatment for sarcoidosis at Brigham and Women's Hospital?

If your symptoms are not severe, treatment may not be necessary and the disease may resolve on its own. This is the case for the majority of patients diagnosed with sarcoidosis. Follow up is required to ensure that there is no disease progression. If the disease affects organ function and quality of life, medication and lifestyle changes can make a difference.

Your multidisciplinary medical team at The Lung Center will include a pulmonologist. He or she will recommend an individualized treatment plan which may include:

Anti-inflammatory corticosteroids drugs such as prednisone
Immunosuppressive agents such as methotrexate
Lifestyle
Stop smoking
Stretching exercise
Cardiovascular exercise
Diet to minimize weight gain
Surgery

In the rare situation when sarcoidosis has severely damaged your lungs, organ transplantation may be necessary. The Brigham and Women's Hospital Lung Transplant Program, the largest in New England, provides the most innovative and compassionate care to our patients with advanced lung disease. Our program has been the source of several transplant milestones, including the first adult lung transplant in Massachusetts and the first bilateral (double) lung transplant in New England.

What can I expect?

When you become a patient of The Lung Center you will meet with many members of the team who will carefully review your medical history and conduct a thorough diagnostic evaluation. You will receive a recommendation for a therapy tailored just for you, based on your specific disorder and other factors, as well as comprehensive monitoring. Our goal is to alleviate or eliminate symptoms so you can confidently resume everyday activities.

Team-based care

Patients with pulmonary sarcoidosis benefit from the wide range of expertise at The Lung Center. Collaboration between thoracic surgeons, pulmonologists, rheumatologists and other specialists ensures comprehensive evaluation and effective treatment.

Any surgery recommended will be performed by an experienced, board-certified thoracic surgeon who is an expert at treating pulmonary sarcoidosis, in collaboration with a treatment team that includes a pulmonologist, as well as nurses and physician assistants who specialize in caring for patients with pulmonary conditions. Your medical team collaborates with rheumatologists, pathologists and radiologists at the Interstitial Lung Disease (ILD) Clinic and Sarcoidosis Service to tailor an effective treatment plan for you.

Where are you located, and how do I book an appointment?

Do you offer additional resources?

Go to our online health library to learn more about thoracic diseases and tests.

Visit the Kessler Health Education Library in the Bretholtz Center for Patients and Families to access computers and knowledgeable staff.

Access a complete directory of patient and family services.