At Mayo Clinic, people with symptoms of cardiac sarcoidosis receive diagnosis and treatment from a team of experts in the Cardiac Sarcoidosis Clinic. These services are available at Mayo Clinic in Arizona, Florida and Minnesota.
Cardiac sarcoidosis is a rare autoimmune disorder that causes cells to clump together in a way that disrupts heart function. These clumps are called granulomas. This condition is a type of sarcoidosis. Cardiac sarcoidosis can mimic other conditions and go undiagnosed for years. It's important to talk with heart doctors (cardiologists) who understand the condition if you have symptoms such as palpitations, chest pain, shortness of breath or a feeling that you're about to pass out.
There is no known cure for sarcoidosis, though the condition can clear up on its own. Treatment is focused on helping you manage your symptoms and improve your quality of life.
What causes cardiac sarcoidosis?
Cardiac sarcoidosis is due to an overactive immune system. Doctors are unsure what causes that reaction, but it might be related to inhaling biological contaminants. Risk factors include exposure to bacteria, viruses, pesticides, fumes and mold.
A team approach
At the Cardiac Sarcoidosis Clinic, doctors who specialize in rheumatology, the heart (cardiologists), imaging (radiologists) and other areas work together to provide excellent, comprehensive care. The team's seamless approach helps ensure an accurate diagnosis and treatment based on the exact type of granulomas affecting the heart.
Your care team also might include nurses, nurse practitioners and other medical professionals trained in treating people with cardiac sarcoidosis. The goal of the team approach at Mayo Clinic is efficient, effective care focused on you.
Your care team will help you prevent or manage complications of your condition. You'll also receive a follow-up care plan that you can share with a primary care provider.
Cardiac sarcoidosis
A person who turned to Mayo Clinic describes how his serious cardiac sarcoidosis was successfully treated.
Jim, patient: We were given two beautiful grandkids there shortly after retirement. They are two special little girls and that really makes life nice. I never had a symptom until that first day of the actual heart attack. I was 100 percent blocked.
Diana, spouse: They put 2 or 3 stents in — the doctors would — and then within months, Jim would have the same kind of symptoms again.
Jim: I was in the hospital again and this time, it was open-heart surgery.
Diana: Oh, my gosh, when he opened Jim up, he said I've seen something today that I've never seen on anybody.
Jim: It was discovered at that time that I had sarcoidosis.
Diana: You're going to have to go to the Mayo Clinic.
Leslie Cooper, M.D., Mayo Clinic Cardiology: He had rapid re-narrowing to the arteries to his heart after they had placed stents. In his case, they were related to an autoimmune disease, sarcoidosis.
Diana: The treatment, the doctors, the teamwork was unbelievable.
Leslie Cooper, M.D.: We took an established drug in another area and applied it for the first time in cardiac sarcoidosis.
Diana: It was experimental, but it put that sarcoid into remission and that gave Jim his life back. It turned out to be a really good risk.
Jim: I didn't realize that the Mayo Clinic was so accessible. When I go there I have no doubt that I'm going to meet competent people in their work and their field. That, I think, gives you the confidence to trust that you are going to be okay. My experience at Mayo I think has helped me be here for my grandkids. I'm just so thankful to be here.
Expert diagnosis and advanced treatments
Each year Mayo Clinic specialists treat about 300 people with cardiac sarcoidosis. This deep experience is key to making an accurate diagnosis of even the most serious or complex conditions. Each person's situation is highly variable. At diagnosis, some people may have no symptoms, while others may already have severe heart failure.
Our doctors have access to the latest tests and technology to help them arrive at the correct diagnosis and eliminate other causes of your symptoms. In seeking accurate answers, your doctor might have you undergo tests or procedures. These may include:
- Blood tests.
- Heart rhythm tests, such as an echocardiogram.
- Ultrasound imaging of the heart.
- Stress tests.
- Angiogram studies.
- Biopsy.
- PET.
- MRI of the heart, though this can't be used in people with kidney disease as it uses an injected contrast agent that can cause problems for damaged kidneys.
Advanced imaging of the heart has enabled doctors to make an early diagnosis of cardiac sarcoidosis. This may improve the chance of successful treatment. The goal is to treat it as early as possible, before permanent heart damage occurs.
Mayo Clinic has led the way in developing innovative treatments for cardiac sarcoidosis. Treatment might include one or more of these approaches:
- Immune-suppressing medicines to reduce the production of granulomas.
- A pacemaker or implantable cardiac defibrillator (ICD) to manage or correct heart rhythm.
- Ablation, which creates scar tissue to stop parts of the heart muscle from triggering irregular rhythms.
- Heart transplant.
Research to improve diagnosis and treatment
The doctors of the Cardiac Sarcoidosis Clinic engage in clinical research. You may be able to enter clinical studies while being treated for this disease. Ask your doctor if you might be eligible for a clinical trial. Some Mayo Clinic-initiated trials are open only to people being treated at Mayo Clinic.
See a list of publications about cardiac sarcoidosis by Mayo Clinic authors on PubMed, a service of the National Library of Medicine.
Nationally recognized expertise
Mayo Clinic is top-ranked in more specialties than any other hospital and has been recognized as an Honor Roll member according to the U.S. News & World Report's 2023-2024 "Best Hospitals" rankings.
Mayo Clinic campuses are nationally recognized for expertise in cardiology and cardiovascular surgery:
- Mayo Clinic in Rochester, Minn., Mayo Clinic in Phoenix/Scottsdale, Ariz., and Mayo Clinic in Jacksonville, Fla., are ranked among the Best Hospitals for heart and heart surgery by U.S. News & World Report.
- Mayo Clinic Children's Center in Rochester is ranked the No. 1 hospital in Minnesota, and the five-state region of Iowa, Minnesota, North Dakota, South Dakota and Wisconsin, according to U.S. News & World Report's 2023–2024 "Best Children's Hospitals" rankings.
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