Sarcoidosis is a condition that develops when groups of cells in your immune system form lumps, called granulomas, in various organs in the body. The inflammation that leads to the formation of these granulomas can be triggered either by infections or by certain substances in the environment.
Sarcoidosis can affect any organ. Most often it affects the lungs and lymph nodes in the chest. You may feel extremely tired or have a fever. You may also have other symptoms depending on what organ is affected. Your doctor will diagnose sarcoidosis in part by ruling out other diseases that have similar symptoms.
Not everyone needs treatment. Treatment will depend on your symptoms and which organs are affected. Medicines can help lower inflammation or suppress the immune system. Many people recover with few or no long-term problems. Sometimes the disease causes permanent scarring in the lungs or other organs.
Explore this Health Topic to learn more about sarcoidosis, our role in research and clinical trials to improve health, and where to find more information.
Your immune system creates inflammation to help defend you against germs and sickness. But in sarcoidosis, inflammation goes off track and the cells in your immune system form lumps, called granulomas, in your body. Over time, inflammation may lead to permanent scarring of organs.
Studies suggest that triggers to your immune system, including infections without symptoms or coming into contact with substances in the environment, can lead to sarcoidosis in certain people. Some of these people have genes that put them at risk for the disease.
There are many risk factors for sarcoidosis. Some risk factors, such as your job, can be changed. But your age, family history and many other risk factors cannot be changed.
Talk to your doctor about your risk factors.
There are no screening methods to determine who will develop sarcoidosis. If you are at risk for sarcoidosis, your doctor may talk to you about trying to avoid insecticides, mold, or other substances that can trigger granulomas.
Many people who have sarcoidosis have no symptoms or generally feel unwell. Symptoms will also depend on what organ is affected. Sarcoidosis most often affects the lungs and the lymph nodes in the chest. If inflammation continues, some people may have permanent scarring (fibrosis) that can cause life-threatening heart or lung problems.
Many people have general symptoms, such as feeling depressed, very tired, and a general feeling of discomfort. You may also faint or have unexplained weight loss.
Lofgren’s syndrome is a classic set of signs and symptoms of sarcoidosis:
Some people have Lofgren’s syndrome when they first develop sarcoidosis. This is most common in women between ages 30 and 40. It usually goes away completely within 2 years.
Sarcoidosis in the lungs may cause you to:
However, you can have sarcoidosis in the lungs without these symptoms. Other symptoms based on the affected organ include:
If untreated, or if the treatment does not work, sarcoidosis can cause serious complications, such as:
Sarcoidosis is diagnosed based on your symptoms, a physical exam and imaging tests or a biopsy. Before diagnosing you with sarcoidosis, your doctor will rule out other possible conditions.
Stages of sarcoidosis
Doctors use stages to describe sarcoidosis of the lung or lymph nodes of the chest. The stages are based on where the granulomas are located and whether there is scarring on imaging tests. Stage IV is the most severe and means you have permanent scarring in the lungs.
Bring a list of symptoms with you to your appointment. Tell your doctor if you live or work near insecticides or mold or have other risk factors for sarcoidosis. During the physical exam, your doctor may:
To diagnose sarcoidosis, your doctor may have you undergo some of the following tests and procedures:
Tests to look at how sarcoidosis is affecting the body
The goal of treatment is remission, which means the condition is not causing problems. Not everyone who is diagnosed with sarcoidosis needs treatment. Sometimes the condition goes away on its own. Your treatment will depend on your signs and symptoms, which organs are affected, and whether those organs are working well. Some people do not respond to treatment.
Your doctor may prescribe medicines to lower inflammation or treat an overactive immune response. Immune-lowering medicines raise the risk of infections. Talk with your doctor about the benefits and risks of these medicines.
Corticosteroids (steroid hormone medicine) to treat inflammation. The corticosteroid prednisone is the most common treatment for sarcoidosis. Corticosteroids can be taken as pills or be injected, inhaled, or taken as eye drops or other topical medicines.
Corticosteroids can have serious side effects with long-term use, especially if taken in high doses. Side effects of the corticosteroid pill may include high blood sugar or blood pressure, mood changes, weight gain, and increased appetite. The pill also raises the risk of cataracts (clouding of the eye), glaucoma (damage to a nerve in the eye from high pressure), or osteoporosis (bone thinning). Common side effects from inhaled corticosteroids include a hoarse voice or a mouth infection called thrush.
Other medicines to lower your immune system response
If you have been diagnosed with sarcoidosis, it is important that you continue your medicine, follow up with your doctor when directed, and make healthy lifestyle changes. Also get support and take care of your mental health.
Some people may have life-long remission (where you do not have symptoms). Others may go into remission for a while and then have a flare, or return, of the disease. Read on below if you are pregnant or planning to become pregnant.
Even if you do not have symptoms, you should see your doctor for ongoing care. For example, your doctor will monitor you for side effects from long-term use of corticosteroids or other medicines.
If the disease is not worsening, your doctor may watch you closely to see whether the disease goes away on its own. If the disease does start to get worse, your doctor can prescribe treatment.
Remission and flares
If your sarcoidosis goes into remission, your doctor may carefully stop your medicines. However, you will still need to watch for a flare. See your doctor if this happens. You may need another round of treatment.
Flares can be hard to predict. Most often, they happen within six months of stopping treatment. The longer you go without symptoms, the less likely you are to have a flare.
Tests for complications
Some people have sarcoidosis that persists or recurs for many years after diagnosis. This may be called chronic, severe, advanced, refractory, or progressive sarcoidosis. Your doctor may order tests to keep track of your condition and check for complications. Visit the Diagnosis section to learn about these tests.
Know when to seek medical care
Watch for the warning signs of complications that may require emergency medical treatment. These include signs of changes in vision that may be a sign of or brain tumors. Other complications that require immediate medical attention include kidney failure, sudden cardiac arrest, and sudden shortness of breath or muscle weakness.
A healthy lifestyle may help you feel better and prevent sarcoidosis from getting worse.
Learn more about these healthy lifestyle changes in our Heart-Healthy Living Health Topic.
Sarcoidosis may make you feel lonely, anxious, or depressed. You may continue to feel fatigued even after your treatment has ended. But certain activities or treatments may help improve your mental health.
If you have complications, your doctor may recommend the following medicines or procedures. Ask your doctor about the benefits and risks of any treatment.
Brain, nerve, or muscle problems:
Severe organ damage. Transplant surgery may be needed if your sarcoidosis causes life-threatening lung, heart, or liver damage.
Pregnancy and sarcoidosis
Most women who have sarcoidosis give birth to healthy babies. However, there is a higher risk of certain complications, including:
If you have sarcoidosis and are pregnant or planning to become pregnant, talk with your doctor. It is important to get good prenatal care and regular sarcoidosis checkups before, during, and after pregnancy. Talk to your doctor about any medicines you take. Some sarcoidosis medicines are not safe to take during pregnancy.
Learn about the following ways the NHLBI continues to translate current research into improved health for people with sarcoidosis.
Learn about some of the pioneering research contributions we have made over the years that have improved clinical care.
In support of our mission, we are committed to advancing sarcoidosis research in part through the following ways.
Learn about exciting research areas the NHLBI is exploring about sarcoidosis.
We lead or sponsor many studies on sarcoidosis. See if you or someone you know is eligible to participate in our clinical trials.
To learn more about clinical trials at the NIH Clinical Center or to talk to someone about a study that might fit your needs, call the Office of Patient Recruitment 800-411-1222.
After reading our Sarcoidosis Health Topic, you may be interested in additional information found in the following resources.