The COVID Long-Hauler Problem That Could Haunt Almost Anyone Whose Been Infected for Life

Melinda Crow

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I belong to a Facebook support group for patients with pericarditis. Unfortunately, our group is rapidly increasing in size.

Pericarditis is an inflammation of the lining surrounding the heart muscle. Normally a thin two-layer bag encasing the heart, inflammation can cause it to thicken, trap fluid between its layers, and in the worst cases, constrict the heart, causing heart failure.

Acute cases are often caused by injury, including piercing or cutting the pericardium during surgery. It is a known location of inflammation for those who suffer from a range of autoimmune disorders like lupus, rheumatoid arthritis, scleroderma, and Sjogren's syndrome, among others. Some patients suffer their first acute attack with no known cause. In areas of the world where tuberculosis is widespread, the bacterial infection of the pericardial fluid is the chief cause of pericarditis.

Pericarditis has also long been known as a possible lingering effect from some viral infections, in fact, many physicians assume viral infections to be the cause in most cases that present without any other contributing factors.

Historically, almost 70% of diagnosed cases of acute pericarditis respond to high-dose NSAIDS like ibuprofen coupled with a medicine primarily used for gout: colchicine. Full recovery normally requires 3-6 weeks.

But then there are the other 30%

When the first incidence goes untreated or undertreated, and often for no known reason, roughly 30% of patients have recurrences. These may be anywhere from six weeks to years following recovery.

Even rarer are patients for who the inflammation never fully clears and the symptoms become chronic in nature. While non-constrictive pericarditis rarely leads to death, it can be a severely debilitating disease, leaving patients unable to perform even the mildest of daily activities.

The newcomers to my Facebook support group for pericarditis sufferers who have been diagnosed post-COVID often fall into either the recurrent or the chronic categories.

Symptoms of pericarditis:

  • Chest pain, that may radiate into the arm, up the neck, and into the back between the shoulder blades. The pain is often worse when lying down or leaning too far forward, as the heart shifts positions in the inflamed pericardium.
  • Shortness of breath
  • Palpitations and irregular heartbeats
  • Rapid heart rate
  • Dry, unproductive cough
  • Dizziness
  • Brain fog
  • Debilitating exhaustion
  • Hypertension
  • Pain from related inflammation may spread to ribs (costochondritis) and lungs (pleurisy)

It can be a challenging diagnosis to make. Many doctors are taught to look for specific changes in heart sounds and in ECG waves. Unfortunately, the ECG changes are temporary and if not caught right away, may never show up again. High levels of inflammation shown as elevated CRP or SED rate may also be indicators, but only in some patients. And again, these markers may only be elevated at the beginning of acute cases.

For thousands of pericarditis patients, none of these diagnostic tools are adequate. Echocardiograph helps pinpoint the diagnosis in some patients, particularly those with large volumes of fluid build-up. Cardiac MRI is the gold standard diagnostic imaging technique, where contrast helps identify the inflamed tissue of the pericardium.

Often dismissed by ER doctors and cardiologists

Because symptoms often mimic a heart attack, emergency room doctors must immediately rule that out first. Once they are assured that the patient is not having a heart attack, they often simply refer the patient to a cardiologist, sometimes delaying treatment while the patient awaits an appointment. Other ER and primary care physicians are under-educated in the newest treatment protocols and the need for adequate treatment of the first instance to prevent a recurrence.

And even in the hands of a cardiologist, many patients are put through a myriad of tests to verify the lack of coronary artery disease before pericarditis is diagnosed and treated.

There are few good treatments available for those with chronic pericarditis

I was first diagnosed with acute pericarditis by an astute primary care physician in 2010. It was presumed to have been caused by a viral infection at some point in my past. I was not aware of any recent illnesses. The first five years I suffered repeated recurrences, some quite debilitating. I had a two-year remission, followed by a year of almost total disability. My cardiologist recommended open-heart surgery to remove the pericardium.

In addition to kidney-damaging high doses of ibuprofen and colchicine, I take two other anti-inflammatory medications, eat an anti-inflammatory diet, and rely on a pharmaceutical company patient assistant program to provide daily injections of the only drug that has been able to allow me to return to a normal life and at least temporarily avoid open-heart surgery: anakinra. My insurance will not cover the cost of the medication.

Research has improved, with doctors at the Cleveland Clinic and Mayo Clinic providing the bulk of the newest information, but the trickle-down of that information to mainstream physicians has been slow.

COVID-19 and the heart

Early in the pandemic, physicians determined that coronavirus caused a storm of inflammation in the body, attacking internal organs, including the heart. Inflammation of the heart muscle itself is called myocarditis and can cause death. Myocarditis and pericarditis often go hand-in-hand, which is what seems to happen in many cases involving post-COVID viral inflammation.

What is most worrisome, given the fact that COVID is known to initiate inflammation of heart structures, is the potential for either myocarditis or pericarditis to occur months or even years following the infection. That could mean even asymptomatic COVID patients are at risk for the inflammation to arise later in life.

As with all things related to this virus, only time will tell whether our bodies will be able to eventually overcome the inflammation left behind, or if chronic pericarditis will one day become the norm, not the rarity it is today.

References:

Cleveland Clinic

Mayo Clinic

British Medical Journals Case Reports

British Medical Journals: Heart

American College of Cardiology

Scientific American

Facebook Support Group for Pericarditis

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Waco, TX
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