Diagnosing and Treating Sarcoidosis
If you have sarcoidosis, you may have symptoms for several months to years before you're diagnosed. Many people think they're tired or short of breath because of some other reason. Specialists such as dermatologists (skin doctors), rheumatologists (joint doctors), and pulmonologists (lung doctors) often diagnose sarcoidosis after they see you and run tests.
What to Expect
Your doctor will probably run routine tests, including drawing your blood, pulmonary function testing and performing a chest X-ray if it was not already done and if you have a new cough that lasts more than a few weeks, or new shortness of breath.
If you have abnormal chest X-ray findings that show enlarged lymph nodes or spots on your lungs, you may be sent to a lung specialist or surgeon for a biopsy specimen (a sample of your lung tissue). This sample can help doctors understand what's causing your symptoms and abnormal X-ray results. Because other diseases or some infections can cause enlarged lymph nodes similar to sarcoidosis, it's important to be properly diagnosed so you can get the right treatment.
After your doctors get the results from your tests, a specialist will discuss the results with you and decide on a treatment plan that would be best while causing the least amount of side effects. Many patients require no treatment at all but should be followed by a specialist regardless. Specialists who treat sarcoidosis should see you in a follow-up visit after you start treatment. You may have your blood retested to monitor the side effects from your sarcoidosis medications.
How Is Sarcoidosis Diagnosed?
There is no blood test that can accurately diagnose sarcoidosis. If you have a skin rash, sarcoidosis sometimes can be diagnosed by a biopsy - a skin specialist will remove a pinch of skin tissue and examine it under a microscope. Because infections can also cause granulomas that look similar to sarcoidosis, your doctor will test your lung or skin sample for infections such as tuberculosis to rule out other potential causes of your symptoms.
- Bronchoscopy is a procedure performed by lung specialist on people with abnormal chest X-ray results. The goal is to get a lung or lymph node tissue sample to help make a diagnosis. For this procedure, you'll be given medication through an IV that will make you sleepy. After spraying you nose or mouth with a local anesthetic to numb the area, a small scope with a camera at the tip is inserted, and more local anesthesia is sprayed through the scope to numb the windpipe and airways. Small pieces of lung or lymph node tissue are collected through the scope and sent to the lab for testing.
- Mediastinoscopy is rarely needed if a bronchoscopy does not make a diagnosis. This procedure is done in a hospital where an anesthesia doctor puts you completely to sleep. A lung surgeon makes a small incision above your breastbone, a camera is used to look down into your chest, and lymph nodes may be removed and sent to a lab for testing.
- Skin biopsy is a procedure done in a dermatologist's office if you have skin rashes or bumps. The doctor numbs the skin near your rash with a needle and numbing medication. They then take a small sample of your skin and send it to the lab for testing.
How Is Sarcoidosis Treated?
After you're diagnosed with sarcoidosis, your doctor will review your test results with you to determine if you need treatment and which kind to try. Many patients with sarcoidosis have minor or no symptoms and it goes away by itself, in which case no treatment may be needed. All patients with sarcoidosis should have breathing tests, electrocardiogram, blood tests, and an eye examination to uncover possible problems that may need to be addressed, even if there are no symptoms.
- Breathing tests- A respiratory therapist will coach you through this test that involves blowing into a tube. The test shows how much lung function you have and can also show how well you have responded to treatment after you've started taking medication.
- Chest CT ("CAT") scans - A computed tomography scan shows your lung tissue and lymph nodes in your chest.
- Eye examinations - Ophthalmologists can sometimes tell whether sarcoidosis is affecting your eyes.
- EKG and Echocardiogram - These are tests of the heart to be sure that the heart is beating normally.
- Laboratory tests (blood and urine tests) - These tests can help doctors see if you have inflammation in your body and high blood calcium levels. The tests also spot potential side effects from medications to treat sarcoidosis.
If a specialist recommends that you should have some form of treatment for sarcoidosis, they often use medications that turn down your immune system's activity. These medications work in different ways and can have different side effects. It is important to tell your doctor if you feel different after starting one of these new medications and to get your scheduled lab work on time.
Corticosteroids, such as prednisone, are medications that turn down the immune system's activity and can improve symptoms of cough, shortness of breath, eye irritation, skin rashes, and joint pain. Prednisone can have side effects such as weight gain, sleeplessness, thinning of the bones, and sometimes vision changes. It may also cause high blood pressure and diabetes. You may be treated with prednisone for a period of time and then tapered off this medication as your symptoms improve.
Other medications. Methotrexate is a medication that is used with or sometimes instead of prednisone. It is taken once a week, orally or as a shot under the skin. Antimalarials, usually used to treat malaria, may help with sarcoidosis that involves the skin or joints. Anti-TNF medications are also used to treat rheumatoid arthritis, and may be given intravenously or injected under your skin for sarcoidosis. All of these medications may have side effects and require close monitoring and adjustments by of your specialist.
This content was developed in partnership with the CHEST Foundation, the philanthropic arm of the American College of Chest Physicians.