Bluffton man becomes first at MUSC Health to get new Alzheimer's treatment

Janet and Chris Long sat side by side in a waiting room in the West Ashley Medical Pavilion, quietly preparing for what would be a first for them and for MUSC Health. The Longs hoped that what was about to happen would slow the progression of a disease that affects millions of Americans but has no cure.

Chris Long, 65, has Alzheimer’s. He was about to try a new treatment called Leqembi. According to the company that makes the medication, a large year and a half long study found that Leqembi helped people with Alzheimer’s disease remember things, solve problems and complete daily tasks for longer than if they weren’t taking the drug.

“I feel lucky, and I feel my timing was lucky,” the Bluffton man said. “I'm excited about starting this and hoping it's going to improve my outlook.”

Not lucky that he has Alzheimer’s, but lucky that the treatment has become available and fortunate that his diagnosis came when it did. Timing is key for Leqembi. It’s only available to patients in the early stages of Alzheimer’s – people like Long, who have mild cognitive impairment or mild dementia.

Long described his symptoms. “I’d started forgetting things and directions. I used to drive all over the place, but I get lost now. And so just general confusion, not really serious, but every once in a while, somebody would point out, ‘Well, I just told you that,’” he said.

 

“And I’m forgetful, so I write everything down or try to compensate. But it's very distracting. So I don't think it's terrible right now. I think I'm functioning, but it's embarrassing sometimes.”

Janet Long wants her husband to stay as healthy as possible so they can enjoy retirement together. She’s become a passionate advocate for him. “Last December, he was diagnosed after a memory test. It was the second memory test in about a year and a half. And that neuropsychologist said, ‘I believe you have early-onset Alzheimer’s.’ And so right from then on, we started researching everything we could and seeing what drug trials there were.”

They connected with neurologist Andrew Keegan, M.D., at the MUSC Health Memory Disorders Clinic. He told the Longs that Leqembi was about to become available. 

According to a news release from the Food and Drug Administration, “the drug works by reducing amyloid plaques that form in the brain, a defining pathophysiological feature of the disease.” The agency called it a safe and effective treatment for Alzheimer’s.

Keegan, an assistant professor in the College of Medicine at the Medical University of South Carolina, was thrilled to see Leqembi’s arrival. Another Alzheimer’s drug, Aduhelm, is also available to patients in the early stages of the disease, but there’s some uncertainty about its clinical benefit. It’s still being studied.

 

“As some people say, finally the door is opening a bit,” Keegan said. “We have drugs that have come from basic research that are translating into humans and maybe are opening the door to have at least a method of slowing the disease that's more biological. We still hope to go down other avenues. It's not a cure. It's just a method of slowing the progression until other things may come along.”

His team took a methodical approach to giving Leqembi to Chris Long. The retiree and avid golfer got an allergy medication first, in case he had a reaction to the Alzheimer’s drug. And he was carefully monitored during the hour that he got Leqembi through an intravenous injection. Afterward, he stayed for three hours so doctors and nurses could make sure he was OK.

“This drug is out there; it's been approved for a little bit of time, but it takes a while to really put it into place and roll it out. So I think we're doing it cautiously. It still has its risks. We're hoping to also monitor to see if there's some benefit there,” Keegan said.

The doctor elaborated on the risks he mentioned. “As you pull out this amyloid, there can be a little bit of inflammation that occurs. There's a small risk of some bleeding. There’s a genetic factor that can play a role. We try to mitigate that.”

Long’s first experience with Leqembi went smoothly. He’ll be back every two weeks for a fresh infusion. “I'm very excited about being able to slow this process,” he said, referring to the progression of his disease. “I'm assuming this is for the rest of my life.”