Drug gives hope to patients who can't shake virus

25 ‘long-haulers’ in testing desperate to get lives back

FORT LAUDERDALE, Fla. -- 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 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 syndrome.

Dr. Norman Gaylis, with Arthritis & Rheumatic Disease Specialties in Aventura, Fla., is leading the trial, approved by the Food and Drug Administration. He anticipates the drug, given through injections in the abdomen, will help alleviate some or all of the long-term symptoms.

The trial is double-blinded, which means half the participants will get a placebo and 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.

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"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 appeared.

She said she caught the virus in November while flying to and from Chicago for work. The fever set in shortly after a return flight.

When Pardo's first symptoms disappeared, the headaches began, followed by severe fatigue, memory loss and confusion.

Desperate to return to her life -- working, using her Pelaton stationary bike and playing in recreational sports leagues -- Pardo says that two weeks into the trial she hasn't noticed a difference.

The 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 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."

Symptoms that 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. He and his fiancee drove to Florida from New York in February hoping to be part of the study. For now, their wedding is on hold while Musser grapples with dizziness, muscle aches and 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 hasn't noticed 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 covid-19 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."

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