Sarcoidosis is a condition in which immune cells form lumps, called granulomas, in your organs. Inflammation is thought to cause granulomas to form and may lead to temporary or permanent scarring at the site of the granulomas. Your inherited genes or certain environmental factors may trigger the inflammation that leads to granulomas.
Recent studies suggest that people get sarcoidosis because of genes that make you susceptible to the disease. Some of the genes that are related to sarcoidosis are associated with the immune system.
Environmental factors, such as infection or exposure to certain substances, can trigger changes in the immune system and lead to sarcoidosis. Studies suggest that these triggers may cause sarcoidosis only in people with genes that make them susceptible to the disease.
You may have an increased risk for sarcoidosis because of your age, your family history and genetics, or your race. Some risk factors, such as occupation, can be changed. Most risk factors, such as age, family history and genetics, race and ethnicity, and sex, cannot be changed.
You can be diagnosed with sarcoidosis at any age, but sarcoidosis is most commonly diagnosed in people age 55 and older.
Your risk for sarcoidosis may be higher if you have repeated exposure to environmental substances that cause inflammation, such as insecticides or mold, or if you work in health care or as a firefighter. Working in these occupations may expose you to substances that trigger the formation of granulomas.
You have a higher risk of sarcoidosis if you have a close relative with sarcoidosis.
Sarcoidosis sometimes occurs after lymphoma, a type of blood cancer.
People of any race can get sarcoidosis, but it is more common in people of African or Scandinavian descent.
Both men and women can develop sarcoidosis, but it is more common in women.
Currently, there are no screening methods to determine who will develop sarcoidosis. If you are at risk for sarcoidosis, your doctor may recommend you try to avoid insecticides, mold, or other environmental sources of substances known to trigger the formation of granulomas.
Many people who have sarcoidosis have no signs or symptoms. Some people experience general signs and symptoms of sarcoidosis such as fever and weight loss. Others will experience signs and symptoms that will depend on which organs are affected. If inflammation continues, some people may develop permanent scarring, which can lead to life-threatening serious heart or lung complications.
Many people have general signs and symptoms, such as:
Sarcoidosis most often affects the lungs and the lymph nodes in the chest. Some people with sarcoidosis in the lungs may wheeze, cough, feel short of breath, or have chest pain. However, people with sarcoidosis in the lungs do not always have lung-related symptoms.
If sarcoidosis affects other organs or parts of your body, you may have other symptoms related to those organs:
Did you know Lofgren’s syndrome is a classic set of signs and symptoms of sarcoidosis?
If sarcoidosis is untreated or if the treatment does not work, inflammation can continue and scarring may develop. Sarcoidosis can cause serious and life-threatening damage to the organs it affects, including:
Your doctor will diagnose sarcoidosis based on your symptoms, a physical exam, imaging tests, or a biopsy of an affected organ. The doctor will also perform tests to rule out other diseases that have similar signs and symptoms.
To diagnose sarcoidosis and determine which organs are affected, your doctor may have you undergo some of the following tests and procedures:
To help diagnose sarcoidosis, your doctor may need to perform tests or ask questions to rule out other medical conditions that have similar signs and symptoms as sarcoidosis.
Doctors use stages to describe the various imaging findings of sarcoidosis of the lung or lymph nodes of the chest. There are four stages of sarcoidosis, and they indicate where the granulomas are located. In each of the first three stages, sarcoidosis can range from mild to severe. Stage IV is the most severe and indicates permanent scarring in the lungs.
The goal of treatment is remission, a state in which the condition is not causing problems. Not everyone who is diagnosed with sarcoidosis needs treatment. Sometimes the condition goes away on its own. Whether you need treatment—and what type you need—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.
Because inflammation is thought to be involved in sarcoidosis, your doctor may prescribe medicines to reduce inflammation or treat an overactive immune system that may be causing too much inflammation in the body. Some of the medicines include:
If you have been diagnosed with sarcoidosis, it is important that you continue your medicine, follow up with your doctor when directed, make healthy lifestyle changes, and prevent complications. Some people may achieve total, or life-long, remission. Other people may achieve temporary remission and go on to experience a relapse, or return of the disease. If you are pregnant, talk to your doctor about the medicines you take to avoid problems for you and your baby.
How often you need to see your doctor will depend on the severity of your symptoms, which organs are affected, which treatments you are using, and whether you have any side effects from treatment. Even if you do not have symptoms, you should see your doctor for ongoing care.
Return to Treatment to review possible treatment options for sarcoidosis.
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.
Some people have sarcoidosis that persists or recurs for many years after diagnosis. This may be called chronic, severe, advanced, refractory, or progressive sarcoidosis. To monitor your condition, your doctor may recommend the following tests at regular intervals.
Your doctor may perform other tests based on which organs are involved and what medicine is prescribed. For example, your doctor will monitor you for side effects of corticosteroids, such as osteoporosis, if used long term.
Your doctor may recommend that you adopt lifelong lifestyle changes to help prevent sarcoidosis from worsening if you do not need medicine. These may include:
If your sarcoidosis goes into remission, your doctor may carefully stop your medicines. However, he or she will still need to monitor you for a relapse, also called a flare, of the disease.
Relapses can be hard to predict. Most people who relapse do so in the first six months after stopping treatment. The longer you go without symptoms, the less likely you are to have a relapse.
See your doctor if you have a relapse. You may need a second round of treatment.
To help prevent some of the complications of sarcoidosis, your doctor may recommend the following:
Other treatments may be used to treat organs that are less commonly affected.
Watch for the warning signs of complications that may require emergency medical treatment. These include signs of blindness or brain tumors, such as changes in your vision or if you cannot see clearly or see color. Other complications that require immediate medical attention include kidney failure, sudden cardiac arrest, and sudden shortness of breath or muscle weakness.
Sarcoidosis may make you feel socially isolated, anxious, or depressed, and you may continue to feel fatigued even after your treatment has ended. But certain activities or treatments may help improve your emotional health.
If you have sarcoidosis and are pregnant or planning to become pregnant, talk with your doctor about the risks involved. Also, if you become pregnant, it is important to get good prenatal care and regular sarcoidosis checkups during and after pregnancy.
Most women who have sarcoidosis give birth to healthy babies. Women with sarcoidosis are at risk for some complications related to pregnancy, including:
Talk to your doctor about any medicines you take. Some medicines prescribed to adults with sarcoidosis 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.