Expert on Guillain-Barre 'cautiously skeptical' about possible link to COVID vaccine

A neurologist who takes care of patients with Guillain-Barre syndrome at MUSC Health in Charleston is “cautiously skeptical” about the idea that Johnson & Johnson’s COVID-19 vaccine may have caused people to get the syndrome.

“If you look at the incidence of Guillain-Barre in the general population before COVID, before we vaccinated people, it's actually a little higher than the percentage who got it after being vaccinated,” said Julio Chalela, M.D.

This week, the Food and Drug Administration updated the Johnson & Johnson vaccine’s warning label to include the risk of Guillain-Barre, a rare neurological disorder. Almost 13 million doses of the vaccine have been given in the United States. About 100 people, mostly men 50 and up, showed symptoms of Guillain-Barre within about a month and a half of getting the Johnson & Johnson shot.

“So the normal incidence is one in every 100,000 people in the United States gets Guillain-Barre,” Chalela said.

“If you do the math, almost 13 million were vaccinated with the Johnson & Johnson vaccine and about 100 got Guillain-Barre. That is less than the expected incidence, which would have been 125 patients, based on the one per 100,000 that we normally see.”

 

But he’s not ruling out a connection to the vaccine – just making the point that people should keep things in perspective.

Guillain-Barre, pronounced Ghee-YAN Bah-RAY, according to the Centers for Disease Control and Prevention, is a rare, autoimmune syndrome. Chalela said it usually shows up after a stomach bug or respiratory infection.

“You're exposed to something that triggers an immune response. That immune response causes your body to build antibodies, and those antibodies sort of go wrong. Instead of attacking an infection, they attack your own nerves, destroying a sheath that surrounds the nerves.”

He said in most cases, that leads to weakness that starts in the legs and moves to the arms, chest and face. “The main concern is that it can affect the muscles involved in breathing and cause difficulty breathing. Then, the patient could end up on a respirator. But the vast majority of patients recover well. It may take time at rehab, but eventually the nerves regain function.”

This isn’t the first time Guillain-Barre has been suspected of being triggered by a vaccine. Just a few months ago, the Food and Drug Administration required a warning for the Shingrix shingles vaccine, saying a study showed an association — but not a causal relationship — between the shot and Guillain-Barre.

And the flu shot has come under scrutiny, too. The CDC says several studies show a variable association between the flu shot and Guillain-Barre from season to season. When there is an increased risk, it’s about one to two additional cases of Guillain-Barre per 1,000,000 vaccine doses. But the CDC also notes that you’re more likely to get Guillain-Barre after getting the flu than after getting a flu shot.

Other possible triggers for Guillain-Barre include surgery and pregnancy, Chalela said. “We’re not really sure why.”

He is sure that there are good treatments, including plasma exchange and antibody infusion.

But he’s afraid the talk about Guillain-Barre and the Johnson & Johnson COVID vaccine will make people already hesitant to get vaccinated even more reluctant. And the risk of getting sick from COVID if you’re unvaccinated is much higher than the risk of getting Guillain-Barre.

“I think it’s going to lead to people deciding not to get vaccinated,” Chalela said.