About Sarcoidosis

What do we currently know about sarcoidosis?

Sarcoidosis is thought to be a systemic inflammatory disease that affects the lungs in up to 80-90% of affected individuals. Thus, some individuals do not have lung involvement but involvement in other organs of the body (eyes, nervous system, lymph nodes, skin, liver, spleen, joints, are some examples of other organs that can be involved).

One of the main motivations of our group is to understand sarcoidosis better since there are so many remaining questions. However, research thus far has revealed some important facts about sarcoidosis. First, the cause of sarcoidosis is likely complex, involving some sort of trigger, which most investigators believe may be environmental, but also involves genetic risk factors. Both of these areas are currently being investigated. Results from the largest epidemiological study to-date (the ACCESS trial) revealed that there is no one unifying environmental trigger and no one single gene mutation responsible for causing sarcoidosis. Thus, the disease is thought to be a complex genetic disease with an environmental component.

What are common symptoms?

Since the majority of individuals have sarcoidosis in their lungs or lymph nodes in their chest, respiratory or chest symptoms are the most common symptoms. Other symptoms that can be frustrating, debilitating, and difficult to treat include symptoms of fatigue, joint pain, and vague chest pains. Some individuals, however, have no symptoms at all. Since sarcoidosis can appear in any organ, individuals may have symptoms specific to their affected organ.

When a new symptom arises, it is important to inform your treating physician. The new symptom may or may not be related to sarcoidosis so communication and evaluation is always a good idea.

How is sarcoidosis diagnosed?

Sarcoidosis can be challenging to diagnose as no single diagnostic test currently exists. Doctors will often take a thorough clinical history, obtain a high-resolution chest CT scan, and ultimately, recommend a biopsy of the affected organ in order to diagnose sarcoidosis. Finally, the doctor should also perform additional tests to exclude other diseases that can mimic sarcoidosis.

What are current approaches in treating sarcoidosis?

The first important issue to discuss with your doctor is whether treatment is necessary at all. Because sarcoidosis can resolve without therapy, it is important to hold off on therapy if at all possible. Once the decision to treat sarcoidosis is made, the mainstay of treatment is corticosteroids (often prednisone). The treatment typically lasts for 6 months or longer, but length of treatment depends on what organs are involved and whether there is a relapse of symptoms. Sometimes it is necessary to add a steroid-sparing medication (such as methotrexate or azathioprine) in order to be able to decrease the dose of prednisone and minimize the side effects caused by prednisone.