Sarcoidosis is a disease characterized by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most commonly the lungs and lymph nodes. But it can also affect the eyes, skin, heart and other organs.
The cause of sarcoidosis is unknown, but experts think it results from the body's immune system responding to an unknown substance. Some research suggests that infectious agents, chemicals, dust and a potential abnormal reaction to the body's own proteins (self-proteins) could be responsible for the formation of granulomas in people who are genetically predisposed.
There is no cure for sarcoidosis, but most people do very well with no treatment or only modest treatment. In some cases, sarcoidosis goes away on its own. However, sarcoidosis may last for years and may cause organ damage.
Signs and symptoms of sarcoidosis vary depending on which organs are affected. Sarcoidosis sometimes develops gradually and produces symptoms that last for years. Other times, symptoms appear suddenly and then disappear just as quickly. Many people with sarcoidosis have no symptoms, so the disease may be discovered only when a chest X-ray is done for another reason.
Sarcoidosis can begin with these signs and symptoms:
Sarcoidosis most often affects the lungs and may cause lung problems, such as:
Sarcoidosis may cause skin problems, which may include:
Sarcoidosis can affect the eyes without causing any symptoms, so it's important to have your eyes checked regularly. When eye signs and symptoms do occur, they may include:
Signs and symptoms related to cardiac sarcoidosis may include:
Sarcoidosis can also affect calcium metabolism, the nervous system, the liver and spleen, muscles, bones and joints, the kidneys, lymph nodes, or any other organ.
See your doctor if you have signs and symptoms of sarcoidosis.
Doctors don't know the exact cause of sarcoidosis. Some people appear to have a genetic predisposition to develop the disease, which may be triggered by bacteria, viruses, dust or chemicals.
This triggers an overreaction of your immune system, and immune cells begin to collect in a pattern of inflammation called granulomas. As granulomas build up in an organ, the function of that organ can be affected.
While anyone can develop sarcoidosis, factors that may increase your risk include:
Sometimes sarcoidosis causes long-term problems.
Sarcoidosis can be difficult to diagnose because the disease often produces few signs and symptoms in its early stages. When symptoms do occur, they may mimic those of other disorders.
Your doctor will likely start with a physical exam and discuss your symptoms. He or she will also listen carefully to your heart and lungs, check your lymph nodes for swelling, and examine any skin lesions.
Diagnostic tests can help exclude other disorders and determine what body systems may be affected by sarcoidosis. Your doctor may recommend tests such as:
Other tests may be added, if needed.
Your doctor may order a small sample of tissue (biopsy) be taken from a part of your body believed to be affected by sarcoidosis to look for the granulomas commonly seen with the condition. For example, biopsies can be taken from your skin if you have skin lesions and from the lungs and lymph nodes if needed.
There's no cure for sarcoidosis, but in many cases, it goes away on its own. You may not even need treatment if you have no symptoms or only mild symptoms of the condition. The severity and extent of your condition will determine whether and what type of treatment is needed.
If your symptoms are severe or organ function is threatened, you will likely be treated with medications. These may include:
Other medications may be used to treat specific symptoms or complications.
Depending on your symptoms or complications, other treatments may be recommended. For example, you may have physical therapy to reduce fatigue and improve muscle strength, pulmonary rehabilitation to decrease respiratory symptoms, or an implanted cardiac pacemaker or defibrillator for heart arrhythmias.
How often you see your doctor can vary based on your symptoms and treatment. Seeing your doctor regularly is important ― even if you don't need treatment.
Your doctor will monitor your symptoms, determine the effectiveness of treatments and check for complications. Monitoring may include regular tests based on your condition. For example, you may have regular chest X-rays, lab and urine tests, EKGs, and exams of the lungs, eyes, skin and any other organ involved. Follow-up care may be lifelong.
Organ transplant may be considered if sarcoidosis has severely damaged your lungs, heart or liver.
In addition to treatment, these self-care tips can help:
Although sarcoidosis may go away by itself, some people's lives are forever altered by the disease. If you're having trouble coping, consider talking with a counselor. Participating in a sarcoidosis support group may also be helpful.
Because sarcoidosis often involves the lungs, you may be referred to a lung specialist (pulmonologist) to manage your care. Taking a family member or friend along can help you remember something that you missed or forgot.
Here's some information to help you get ready for your appointment and know what to expect from your doctor.
Before your appointment, make a list of:
Questions to ask your doctor may include:
Don't hesitate to ask other questions during your appointment.
Be ready to answer questions your doctor may ask:
Your doctor will ask additional questions based on your responses, symptoms and needs. Preparing and anticipating questions will help you make the most of your time with the doctor.
© 1998-2021 Mayo Foundation for Medical Education and Research (MFMER). All rights reserved.