Cardiac Sarcoidosis Clinic Overview

At Mayo Clinic, people with symptoms that indicate they might have cardiac sarcoidosis receive diagnosis and treatment from a team of experts in the Cardiac Sarcoidosis Clinic. These services are available at Mayo Clinic's campuses in Arizona, Florida and Minnesota.

Cardiac sarcoidosis is a rare autoimmune disorder that causes cells to clump together into granulomas that disrupt heart function. It's a variation 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 can help manage symptoms and improve your quality of life.

What causes cardiac sarcoidosis?

Cardiac sarcoidosis: A heart under attack

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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 certain bacteria and viruses, chemical exposure such as pesticides or fumes, and mold exposure.

A team approach

At the Cardiac Sarcoidosis Clinic, doctors who specialize in rheumatology, the heart (cardiologists) and imaging (radiologists) work with you to provide excellent, comprehensive care. Your care might involve other specialists as well because the immune response that causes granulomas in your heart can also result in granulomas accumulating in other organs.

It's likely that other staff will be involved in your care, including nurses, nurse practitioners and other medical professionals trained in the treatment of cardiac sarcoidosis. Our team's seamless collaborative approach means you get an accurate diagnosis and treatment based on the specific type of sarcoidosis you have. You receive efficient, effective care focused on you.

You'll also receive thorough follow-up care, ensuring you're well cared for after diagnosis. Mayo Clinic's staff will also partner with your primary care and local doctors for continued care.

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 depth of experience is key to making an accurate diagnosis of even the most serious and complex conditions. In addition, this expertise enables them to discern the right treatment the first time. With this condition, each person's situation is highly variable. At diagnosis, some people may have no symptoms, while others may already have severe advanced heart failure.

Our doctors use the latest tests and technology to arrive at the correct diagnosis and eliminate other possible causes of your signs and symptoms. In seeking accurate answers, your doctor might have you undergo:

  • 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

Advanced imaging of the heart has enabled doctors to make an early diagnosis of cardiac sarcoidosis, thus improving your chance of successful treatment. The goal is to treat as early as possible, before permanent heart damage occurs.

Mayo Clinic has led the way in developing innovative treatments for many heart disorders, including cardiac sarcoidosis. Treatment might include one or a combination of these approaches:

  • Immune-suppressing medications to reduce the production of granulomas
  • A pacemaker of 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 have the opportunity to participate in experimental therapies or clinical trials while being treated for this disease. Ask your doctor if you might be eligible for any of the active clinical trials in cardiac sarcoidosis. 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 doctors on PubMed, a service of the National Library of Medicine.

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July 23, 2022