Dr. M.J. Bazos, MD. Patient Handout

About Your Diagnosis

Sarcoidosis is a disease caused by inflammation. It can appear in almost any body organ but most often starts in the lungs or lymph nodes. It is associated with granulomatous lesions of unknown cause. The term granuloma refers to a special type of tissue inflammation seen under the microscope by a pathologist. Many conditions are associated with granulomas, including sarcoidosis. Sarcoidosis may affect any organ or organ systems, but is not contagious and is usually easily treatable. The diagnosis of sarcoidosis is tricky to make because patients may not have any symptoms, and other causes of granulomas need to be excluded. The chest x-ray is often abnormal because the lung is one of the most common sites of involvement. The physical examination is often normal, but it depends on which organs are involved and how extensive or active the sarcoidosis is. Your doctor may order blood tests including a serum angiotensin converting enzyme level (ACE), breathing tests, a computed tomography (CT) scan of the chest, a tissue biopsy, and tests for tuberculosis (TB). If tissue sampling of the lung is necessary, bronchoscopy or mediastinoscopy is often performed.

Living With Your Diagnosis
Most patients with sarcoidosis do not have any symptoms, but some may have shortness of breath, dry cough, generalized aching of the joints, or tender red areas over the legs. Virtually any organ can be involved with sarcoidosis. In complicated cases, inflammation of the eye, high serum calcium levels, liver and kidney problems, heart rhythm problems, or various skin lesions may be found.

Sarcoidosis usually responds to oral steroids (prednisone) within 1–3 months, but close followup and dose adjustments are necessary. In “earlier” stages and asymptomatic patients, there is a 50% to 80% chance of spontaneous recovery within 2 years. Side effects from prednisone include rapid mood swings, weight gain, facial puffiness, easy skin bruising, high blood pressure, increased blood sugar, cataracts, osteoporosis, and increased susceptibility
to infections. Prednisone is usually given for at least 6–12 months in symptomatic patients. It is generally tapered to the lowest dose necessary for control of the sarcoidosis. Response to therapy is judged by any changes in symptoms, chest x-ray findings, breathing test measurements, and any additional parameters that were abnormal at the time of diagnosis. Unfortunately, there is no one single measure for determining the activity level of sarcoidosis, and relapses may occur.

The DOs
• Obtain an influenza vaccination each fall.
• Obtain/update the pneumococcal vaccination.
• Maintain close contact with your health care provider.
• Monitor your blood sugar carefully, especially if diabetic and taking prednisone.

The DON’Ts
• Avoid vitamin D or calcium supplements.
• Avoid excessive direct sun exposure.
• Stop smoking.

When to Call Your Doctor
• If you have excessive thirst, urination, or weight change.
• If coughing produces discolored sputum or blood.
• If fever or chills are present.
• If you have any concerns about the effects of the medications you are taking.

American Lung Association