Sarcoidosis is a rare inflammatory disease that causes the immune system to overreact, causing clusters of inflamed tissue, or "granulomas" to form in different organs of the body. Because the causes of sarcoidosis are still unknown and the symptoms vary greatly depending on what organs in the body are affected, we still have a lot to learn. We spoke with Dr. Logan Harper, a doctor at the sarcoidosis and interstitial lung disease center at Cleveland Clinic, about what patients and their loved ones should expect when facing this rare disease.
Sarcoidosis: The Great Mimicker
Because sarcoidosis can impact different organs of the body, getting a diagnosis can be a long journey. For some patients, it may take several months to years before a diagnosis is determined. Dr. Harper admits that even as an expert in the field, often, a patient is not referred to him until after receiving a chronic lung disease diagnosis. “Most of the time, sarcoidosis affects the lungs in some way, so patients usually come to me with breathing issues,” he said. “But rashes or eye problems are other common symptoms.”
Sarcoidosis is often called the great mimicker. The symptoms of sarcoidosis often mimic other more common diseases. Doctors may order several tests and procedures to rule out other health conditions. Dr. Harper starts by recommending lung function tests to measure how well the lungs work and how easily oxygen is delivered to the body. For patients who have symptoms that suggest sarcoidosis in the lungs, a chest CT scan may be ordered. A chest CT scan will determine if the lung tissue and lymph nodes are normal and alert the doctor if granulomas have developed. Blood and urine tests may be ordered to help evaluate the patient’s overall health, including the liver and kidney function. Additional tests and procedures may be recommended to determine if there is damage to other organs like the eyes and heart.
Meet the Treatment Team
Dr. Harper stresses the importance of working closely with your healthcare team to manage sarcoidosis and track the effectiveness of treatment. “At the Cleveland Clinic we have a whole team of doctors that help with treatment,” Dr. Harper continued. “Dermatologists are frequently called in to help us with screening and treatment of skin conditions. A rheumatologist can help with joint pain. And we have a dedicated cardiologist and neurologist who help us with patients with cardiac and neurological sarcoidosis.” Patients with more complex clinical presentations like cardiac, pulmonary and neurological sarcoidosis often require long term treatment. Dr. Harper shared that while there is no cure for sarcoidosis, in some patients, sarcoidosis resolves on its own. However, even if a patient does not need medication or treatment, it is still important to be monitored by their doctor.
For patients that do require medical treatment, medications can be used to manage symptoms, prevent complications, and improve outcomes in patients. Different medications may be used to treat sarcoidosis depending on the organs impacted. It is important for patients before starting a new medication to discuss potential side effects with their doctor. Corticosteroids are the most commonly used medication for patients with sarcoidosis because it can turn down the immune system’s activity and reduce inflammation. However, there are side effects if taken long term, so doctors will work with the patient to gradually lower the dosage of medication. “We often have to balance the risk versus the benefit of treatment and determine whether or not it will improve the quality of life,” Dr. Harper said.
In more severe cases, problems may arise when sarcoidosis is in other organs such as the lungs, nervous system and heart. In pulmonary sarcoidosis, granulomas in the lung tissue can cause inflammation, stiffness, and scarring that can lead to pulmonary fibrosis. In these severe cases, additional treatments may be recommended like respiratory medications, oxygen therapy, and pulmonary rehabilitation. “We focus on treatment when they're signs that organs are being damaged by the granulomas. So, drop in lung function, skin rashes, risk of vision loss or symptoms like extreme joint pain,” Dr. Harper explained.
Looking to the Future
When he is not helping patients, Dr. Harper is passionate about researching ways to address healthcare disparities stemming from race and income. Although not well understood and future work is needed, one study he referenced found that a patient’s sarcoidosis outcome is strongly influenced by income. At Cleveland Clinic, Dr. Harper and his team recently established a Community Advisory Board, which is a group of patients living with sarcoidosis, who work to develop educational materials so that patients will feel more welcome. “We want to make sure the way we provide care is designed in collaboration with our patients so that our care is truly patient centered,” he said.
Dr. Harper is focused on using more patient-centered treatment methodologies. For instance, current medical treatments focus on helping patients manage symptoms caused by the granulomas, but Dr. Harper believes there are many symptoms like depression and anxiety that affect people living with chronic lung disease including sarcoidosis that often go under-recognized by doctors. “There are symptoms that don't seem to respond to our current medications, such as fatigue and mood changes. So, we're working on developing more patient-centered interventions, things like incorporating mindfulness and exercise, and nutrition practices that can help people really live their lives to the fullest.”
Learn more at Lung.org/Sarcoidosis.
Blog last updated: August 21, 2023
