Sarcoidosis

Sarcoidosis is an inflammatory disorder that causes lumps or nodes, called granulomas, to form. Granulomas are clusters of white blood cells that are “walled off” from the rest of your body. They do this to protect you from things your immune system sees as harmful — in this case, your own body.

These lumps can form anywhere. Mostly in your lungs and lymph nodes but also in your eyes, skin, muscles, heart and nervous system. When sarcoidosis affects only one area, it’s called single-organ involvement. More than one area is known as multi-organ sarcoidosis.

We don’t know exactly what causes sarcoidosis, but it seems some people may have more sensitive immune systems that can overreact to things like bacteria and viruses. And while your immune system is involved in sarcoidosis, it’s not considered an autoimmune condition.

But because many sarcoidosis symptoms resemble autoimmune ones, it’s easily confused with other conditions. That’s why it’s important to have providers familiar with diagnosing it on your side.

What to expect at your first visit

When you come for your first appointment, your provider will want to get to know you and hear in your own words what’s been going on. They might ask:

• What kind of symptoms are you having?
• When did you first notice them?
• Have they been getting worse?
• How are they affecting your life?
• Have you been diagnosed with any other health conditions?
• Do any family members have similar health conditions?

You’ll also have a physical exam so your provider can look for signs of sarcoidosis and check on your general health.

Testing for sarcoidosis

Because symptoms of sarcoidosis are similar to other diseases, we do several tests to confirm a diagnosis. You may have:

• A chest X-ray.
• An MRI.
• A CT scan.
• A granuloma biopsy.

Our providers typically use imaging and biopsies to diagnose sarcoidosis. But, depending on where the granulomas are and your symptoms, we may use other tests, too, like:

• Pulmonary function testing.
• Complete blood count.
• Kidney function tests.
• Liver function tests.
• Urinalysis.
• Bronchoscopy.
• Electrocardiogram (EKG).
• Gallium scan.
• Mediastinoscopy.
• PET scan.
• Pulmonary function tests.
• Tuberculosis test.
• Slit-lamp examination.

If your test results confirm that you have sarcoidosis, your care team will work together to build a personalized treatment plan. Your plan will depend on where granulomas are in your body and how to best manage your symptoms and prevent damage to your organs. 

If you have mild symptoms, you may not need treatment. The condition may go away on its own (remission). About two-thirds of people diagnosed with sarcoidosis no longer have it within two to three years.

But if your symptoms are severe or affecting your quality of life, your provider may recommend lifestyle changes and/or medications.

Lifestyle changes

Keeping your body healthy can reduce inflammation and relieve your sarcoidosis symptoms. We encourage you to:

• Quit smoking.
• Stay current with your vaccinations.
• Eat a well-balanced diet.
• Exercise regularly.
• Drink plenty of water.
• Sleep six to eight hours each night.
• Avoid breathing in excessive dust and chemical fumes that may inflame your lungs.

Medications

We may prescribe medications like these to relieve symptoms and reduce granuloma formation and inflammation:

• Corticosteroids.
• Immunosuppressants.
• Nonsteroidal anti-inflammatory drugs (NSAIDs).
• Anti-tumor necrosis factor-alpha antibodies (anti-TNF-alpha antibodies).

We’ll watch you closely when you start a new medication. And we’ll check in with you often to catch any side effects and adjust your medications when needed.

Ongoing care

Sarcoidosis usually goes away on its own or with treatment within two to three years. But sometimes it can linger and become chronic (ongoing). If so, your providers will see you regularly to keep an eye on your symptoms and update your medications to prevent permanent organ damage.

Taking the Next Step

Finding out you have sarcoidosis can come as a surprise. But with the right treatment and experienced healthcare providers, you can manage — or even get rid of — your symptoms entirely. Cleveland Clinic’s caring sarcoidosis specialists are here to help you move forward and make that happen.