Checking in with first person to get Leqembi treatment for Alzheimer's at MUSC Health

Chris Long and his wife, Janet, were thrilled when he became the first patient at MUSC Health to receive the Alzheimer’s drug Leqembi. Now, more than a year and a half later, we checked back in with them during Alzheimer’s and Brain Awareness Month.

We found the Longs on vacation in Michigan, where Chris will continue to get his Leqembi infusions until they return to South Carolina in the fall. Leqembi is designed to slow the progression of Alzheimer’s disease.

Janet thinks the medication has had an impact. “I think that the Leqembi has really slowed things down,” she said. “He still has full conversations with people. He still has his full sense of humor. He still golfs; we do all kinds of stuff with our friends.”

He also gave speeches at the recent wedding rehearsal dinners for their sons, she said. “We were out there Greek dancing at the second one.”

 

Chris said getting Leqembi has made him feel more hopeful about the future. But he knows the disease is not going away.

So what does his doctor think? Neurologist Andrew Keegan, M.D., was encouraged by what he’s seen. “He has clinically remained stable, which is excellent to see. Our goal with these treatments is to slow decline.”

Chris is one of more than 80 people now getting Alzheimer’s treatment infusions at MUSC Health. Some of them are getting Kisunla, which, like Leqembi, targets the amyloid plaques that form in the brains of people with Alzheimer’s. 

Keegan’s colleague, neurologist Nick Milano, M.D., said the medications work a little differently from each other. But both are monoclonal antibodies that can help the immune system remove harmful plaques.

 

Asked how effective the medications seem to be, Milano said this: “We don't have large enough numbers to really do a scientific assessment of that. But I think in almost all of our patients, the drugs are well-tolerated, and they stick with them. The few patients that I've seen that are now past that year-and-a-half stage, they seem to be doing well. A lot of them are holding steady without significant decline.”

Of course, he said, there’s no way to know how they’d be doing if they weren’t on the drugs. 

There are a few other things Milano wanted to point out. 

First, the medications are only approved for use in people who have early symptoms of Alzheimer’s disease. At this point, they’re not for people who have evidence of Alzheimer’s disease proteins on a brain scan or blood test but don’t have cognitive impairment, although Milano said that possibility is being studied. 

Second, he said doctors need to be careful in choosing who should try the medications. People with a particular genetic variant are more susceptible to side effects from them, so patients need genetic testing before getting the drugs.

Third, he recommended that patients see neurologists if they want to find out about getting the medications. “And when they're talking with their neurologist, they should ask about the neurologist’s experience with these drugs as well as their plan for monitoring these drugs and handling the potentially serious side effects.”

That brings us to his fourth point: The side effects can be serious. They include inflammation and bleeding, along with headaches, nausea and other factors. The infusions can also trigger allergic reactions and other issues, including a fever, lightheadedness and a faster or slower heart rate.That said, a recent study found only 1% of patients had side effects that were severe enough to send them to the hospital.

“You do need to weigh the benefits of these drugs, which are not a cure. They slow progression, but with some risk, so make sure that your treatment plan is something that you're comfortable with to manage that risk. The med’s not right for everyone,” Milano said.

 

Finally, Milano said MUSC Health is working to expand the reach of Alzheimer’s treatment infusions beyond Charleston. That includes working to add clinics to other hospitals in its Regional Health Network and offering online consultations through the South Carolina Alzheimer’s Network.

Chris Long has spent plenty of time in the infusion clinic in the West Ashley Medical Pavilion in Charleston. “I usually read. Sometimes just veg. Don't do a heck of a lot. It's about an hour, and you wait about a half-hour after that,” he said, referring to a 30-minute period where the infusion team makes sure the patient doesn’t have any immediate problems from it.

He and his wife are glad to have something to try to fight Alzheimer’s with, even something that can’t cure him. Janet had some advice for others in their position.“As soon as you start wondering whether you could have Alzheimer's, get in to see a neurologist because the sooner you get analyzed as to whether you can have the treatment, the better.”