What You Need to Know About Cardiac Sarcoidosis

A rare condition that can make your heart flutter
Inflammation of the Heart: Symptoms You Need to Know

You may feel fine, but a recent heart test may suggest that you have cardiac sarcoidosis — an inflammatory condition that can affect multiple organs, including the heart.

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The condition is rare, and the exact cause is unknown. But doctors believe that when inflammation is involved, your body’s immune system is attacking some unknown substance.

Often, inflammation goes away on its own. But when the heart is involved, treatment often is necessary, says pulmonologist Manuel Ribeiro Neto, MD.

If you’re noticing a fluttering in your chest, shortness of breath,  or lightheadedness or experience episodes of passing out, don’t simply wait and hope they stop. Your doctor can help identify the exact problem and decide what treatment is right for you.

Effects of cardiac sarcoidosis

  • Low heart rate — “In about 5 percent of [sarcoidosis] cases, heart problems such as heart block can occur,” Dr. Neto says. “That inflammation will block the electrical impulse from traveling through the heart, causing it to beat at a lower rate.” For example, instead of beating 60 to 70 times per minute, the block may cause your heart to beat more slowly — at 25 to 35 beats per minute. This can lead to dizziness and may cause you to faint or pass out.
  • Fast heart rate — Another classic sign of cardiac sarcoidosis is ventricular arrhythmia, which comes from the bottom of the heart. Instead of causing a blockage in the electrical system, the inflammation can actually do the opposite, Dr. Neto says. It can stimulate the electrical system and cause irregular rhythms in the chambers of the heart. If this happens, you may feel palpitations (like your heart is beating too fast or sometimes skipping a beat) or feel faint or collapse.
  • Heart failure — A final problem cardiac sarcoidosis can cause is heart failure. The inflammation in the heart muscle can become so intense that your heart muscle gets weak and does not pump as well as it should. Some patients can end up needing a heart transplant and/or heart pump.

Who is at risk?

Inflammation of the heart doesn’t affect any particular age, gender or race more than others, Dr. Neto says. The condition can affect anyone, but it’s more likely if you have had sarcoidosis in other organs.

“We’re seeing a different spectrum of ages, gender and race with cardiac sarcoidosis,” he says. “However, most patients will have sarcoidosis present in other organs. They may have had it in other organs prior to when cardiac sarcoidosis presents.”

About 25 percent of patients with cardiac sarcoidosis have sarcoidosis only in the heart and not in other organs.

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Symptoms of cardiac sarcoidosis

Sarcoidosis sometimes develops gradually and produces symptoms that last for years. Other times, symptoms appear suddenly and can progress quickly.

Many people with sarcoidosis have no symptoms, so the disease may be discovered only when you have a chest X-ray for another reason.

The main symptoms of cardiac sarcoidosis are:

  • Palpitations.
  • Shortness of breath.
  • Lightheadedness, fainting or passing out.

These symptoms also show up with other heart conditions, so your doctor will need to rule out other possibilities first. Cardiac sarcoidosis is “a diagnosis of exclusion,” Dr. Neto says.

“If you already have sarcoidosis in other organs and are experiencing heart-related symptoms, such as palpitations or shortness of breath, bring this up in your visits with your physician,” Dr. Neto says.

Treatment for cardiac sarcoidosis

A multidisciplinary approach to treatment is critical, says cardiologist Emer Joyce, MD, PhD.

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Depending on the symptoms, specialists in sarcoidosis, advanced cardiac imaging, heart failure and cardiac electrophysiology should be involved, Dr. Joyce says.

“Those specialists are readily available at large medical centers such as Cleveland Clinic, and allows us to offer integrated care to our patients,” she says.

In most cases, especially where sarcoidosis in the heart is causing symptoms and problems, you likely will need treatment, Dr. Neto says. Options include:

  • Steroids.
  • Steroid-sparing agents such as methotrexate and leflunomide, to allow a decrease of or possibly end the steroids.
  • Pacemakers to better regulate your heart if your condition is causing a significant heart block.
  • Defibrillators to bring your heart back to a normal rhythm, especially if your arrhythmia is causing you to pass out.
  • If worsening heart failure develops, despite treatment, a heart transplant may be needed.

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