Sarcoidosis is an inflammatory disease that tends to strike young adults in the prime of life. It commonly affects the lungs but can attack other organs in the body.
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While many people’s symptoms remain mild and never need treatment, experts can’t yet predict whose disease will get worse. Plus, symptoms of sarcoidosis are similar to those of many other diseases, so people don’t know they have it until the disease has advanced.
That’s why experts at Cleveland Clinic’s Sarcoidosis Clinic advise getting a second opinion from sarcoidosis experts when the diagnosis is suspected or confirmed.
“Expert care is critical for patients with sarcoidosis. Prompt evaluation and treatment by a multispecialty team can lessen the likelihood the disease will cause permanent damage,” says Cleveland Clinic pulmonologist Daniel A. Culver, DO.
Advanced forms need special attention
Although most people with sarcoidosis do very well, some develop types associated with poorer outcomes, such as treatment-resistant pulmonary sarcoidosis, cardiac sarcoidosis, neurosarcoidosis or multiorgan sarcoidosis.
Here’s what we know about these advanced forms of the disease:
Treatment-resistant pulmonary sarcoidosis
Ten to 20 percent of patients with sarcoidosis develop treatment-resistant pulmonary disease — primarily pulmonary fibrosis and pulmonary hypertension. These complications are the leading cause of death from sarcoidosis.
There is no way to predict which patients with pulmonary fibrosis will develop significant fibrosis or whether treatments decrease this risk.
“It’s important to know that steroids are not the only treatment. When steroids fail, we have a lot of other options to offer,” says Dr. Culver.
Cardiac sarcoidosis is the second leading cause of death from this disease, which can occur suddenly from heart block or ventricular arrhythmia, a type of abnormal heart rhythm.
Multiple medications can treat cardiac sarcoidosis, and those who develop ventricular tachycardia may benefit from an implantable cardioverter-defibrillator to prevent sudden death. Heart transplantation is an option for some patients.
“When this form of sarcoidosis is caught and treated early, the long-term prognosis is very good. It’s certainly better than what many internet sites suggest,” says Dr. Culver.
Scientists don’t know much about neurosarcoidosis, including how common it is or its impact on patients. That’s because experts haven’t come to a consensus on its features, criteria for making a diagnosis or guidelines for treatments. That being said, when neurosarcoidosis is recognized early, it is highly treatable.
“Patients respond well to aggressive treatment before permanent damage occurs,” says Dr. Culver.
This type of the disease can be all over the place — literally. Where and how many organs are involved varies quite a bit from person to person. Dr. Culver doubts that experts will ever develop a standardized approach to treating this type of sarcoidosis. Some symptoms require treatment to improve quality of life, while others require treatment to improve length of life.
“Multispecialty team care is very important for these patients,” says Dr. Culver.
Developing tomorrow’s treatment approaches
As a member of the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG), Cleveland Clinic’s Sarcoidosis Clinic offers the most sophisticated diagnostic methods and treatments designed to help patients with advanced forms of sarcoidosis live longer and enjoy a better quality of life.
“We are committed to offering expert, multidisciplinary care to patients with all forms of sarcoidosis and to developing new treatment approaches through research,” says Dr. Culver.