South Florida Sun-Sentinel (Sunday)
COVID-19 long-haulers pin hope on drug trial
Baffling syndrome causing some people to continue suffering with symptoms
For the people who can’t get rid of COVID-19 or suffer from symptoms that linger months or even a year after getting infected, a South Florida drug trial could provide hope.
The drug, called leronlimab, is used to ease the suffering of people who can’t shake COVID-19 symptoms. This group, also known as long-haulers for the length of time they remain ill, makes up about
10% of people who get the virus. They have become increasingly desperate as scientists are unable to explain the baffling syndrome.
Dr. Norman Gaylis, with Arthritis & Rheumatic Disease Specialties in Aventura, is leading the trial, approved by the Food and Drug Administration. He anticipates the drug, given through injections into the belly, will help alleviate some or all of the long-term symptoms.
The trial is double-blinded, which means half of the participants will get a placebo, half will get the drug. None of the participants or Gaylis will know who got which until the trial is over.
Once a week for eight weeks, participants get two shots in the abdomen. They return four weeks later for observation.
“There are not a lot of active trials with treatments available for long-haulers,” said Melissa Pardo, a marketing director living in Marco Island. “When I learned of this one I immediately wanted to be involved. I felt like there might finally be hope.”
Previously healthy, Pardo, 34, still tests positive for COVID-19 five months after her fever first appeared.
Pardo says she caught the virus in November while flying to and from Chicago for work. The fever set in shortly after a return flight.
When her first symptoms disappeared, the headaches began, followed by severe fatigue, memory loss and confusion. Her COVID-19 tests continue to come back positive.
Desperate to return to her prior life — working, using her Pelaton and playing in recreational sports leagues — Pardo says two weeks into the trial, she hasn’t noticed a difference.
The South Florida trial will include 25 long-haulers.
“We hope they will respond and we will get the results that will allow us to treat a much larger population,” Gaylis said. If the drug proves successful in reducing symptoms, Gaylis will request it for those who received the placebo. “In some people, COVID-19 goes anywhere in the body — the brain, joints, muscles, heart ... it’s got its own GPS. What’s so crazy is everyone who is a long-hauler presents differently.”
Some of the symptoms long-haulers report include fatigue, brain fog, shortness of breath, joint pain, trouble thinking clearly and even organ damage. Scientists are still trying to learn whether these symptoms are directly linked to the virus or some preexisting condition.
Eli Musser, 42, says his symptoms are debilitating and have lingered for more than a year.
Musser and his fiance drove to South Florida in February from New York hoping to be part of the study. For now, their wedding is on hold while Musser grapples with dizziness, muscle aches, shortness of breath.
“Before I was running two or three days a week, going to the gym. I walked everywhere. Now I can’t lift groceries,” he said.
So far, Musser has had two treatments as part of the trial and doesn’t notice a difference.
“I don’t know if I’m getting the actual drug or not,” he said. Musser said he is in touch with participants in a similar trial in Georgia who told him their symptoms have improved from Leronlimab.
“All of us are looking for hope,” he said.
Some long-haulers report their symptoms disappeared or lessened after getting vaccinated.
Survivor Corps, an online group of people with long-term COVID19 symptoms, conducted an informal member survey that showed
216 people the same after vaccination, while 171 said their conditions improved and 63 said they felt worse. Researchers want to study this more suggesting the placebo effect could be one simple explanation. Another theory suggests the COVID-19 vaccine could be prompting the immune system to rid the body of any virus it’s still harboring.
“If we get through the trial and there is no change, I will try taking the vaccine,” Musser said. “For now, I’m taking it day by day and hoping this works.”