The first new Alzheimer’s remedy in 20 years was given full FDA approval earlier this month — and now two patients who participated within the scientific trials have spoken about their private expertise with the drug to Fox News Digital.
Lecanemab, offered underneath the model identify Leqembi, works by lowering amyloid plaques within the mind, which is among the hallmarks of Alzheimer’s.
In early trials, the drug was proven to sluggish cognitive decline by 27%.
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Two Ohio patients who participated within the trials not too long ago spoke to Fox News Digital about how Leqembi has impacted their Alzheimer’s journeys — and adjusted their lives.
Joan Murtaugh’s story: ‘It’s not a miracle, nevertheless it’s gradual progress’
Joan Murtaugh, 77, lives in Lakewood, Ohio, together with her husband, Larry.
She first began noticing reminiscence issues almost seven years in the past, simply after her seventieth birthday.
“Timing is everything,” her husband, Larry Murtaugh, instructed Fox News Digital in an interview. “It was Joan who made an appointment at the brain center clinic.”
In 2017, Murtaugh was identified with gentle cognitive impairment.
The subsequent 12 months, after having a 3-D MRI and spinal faucet, she discovered that she had an enzyme in her spinal fluid that predicted a 65% likelihood of getting Alzheimer’s in her lifetime.
In February 2020, Murtaugh obtained some excellent news: She was eligible to take part in a double-blind research trial for a brand new drug, Leqembi, at Cleveland Clinic in Ohio.
“I assume it was because it was obvious there was some plaque in my brain, which they realized was causing Alzheimer’s,” Murtaugh instructed Fox News Digital.
This was Phase 3 of the scientific trial, which included some 1,800 folks worldwide. Murtaugh was one in all solely eight folks to obtain the drug at Cleveland Clinic.
“I am fully functional — I’m still doing everything I always did.”
A number of months later, she started getting twice-monthly infusions of what was both a drug or a placebo.
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To today, Murtaugh nonetheless doesn’t know if she was getting the true factor or a placebo — she gained’t discover out till the final particular person has obtained the final dose of the double-blind research. Yet she stated she “has a hunch.”
“I am fully functional — I’m still doing everything I always did,” Murtaugh stated.
“I can still drive my car, shop, garden, cook, read — all those things.”
Throughout the whole trial interval, Murtaugh stated she by no means acquired any worse. She simply skilled the identical gentle signs she’d had earlier than beginning the drug — and she or he could have even improved a bit.
Although Leqembi has been linked to some potential uncomfortable side effects, she skilled none.
“When you first hear the word ‘Alzheimer’s,’ a chill goes through you — it’s like you’re looking into a dark abyss,” Murtaugh stated.
“But this new drug offers great hope.”
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In September 2021, the trial portion of the research ended and Murtaugh was eligible to begin receiving the precise medicine, which she nonetheless takes right this moment.
Instead of the prolonged infusions, she now will get the medicine by way of an EpiPen injection as soon as per week with the assistance of her husband.
The drug is at the moment coated by Medicare, which implies Murtaugh will get it totally free — and she or he hopes that can proceed for the foreseeable future.
While the Murtaughs notice that the longer term could carry challenges, they regard Leqembi as “a ray of sunshine in a very cloudy sky.”
Paired with different approaches reminiscent of cognitive speech remedy, they’re optimistic that the drug will proceed to maintain Alzheimer’s signs at bay.
“We’re not going to declare victory, but we’re on the right path and we have the right team at Cleveland Clinic,” stated Larry Murtaugh.
“It’s not a miracle, but it’s gradual progress.”
John Domeck’s story: ‘I thank God every single day’
A retired lawyer in Aurora, Ohio, John Domeck was simply 57 years outdated when he was identified with Alzheimer’s.
The folks round him — his colleagues on the regulation workplace and his household at house — began noticing his reminiscence lapses earlier than he did.
After 30 years of by no means having to take many notes at work, Domeck, now 61, had began to jot down issues right down to keep away from forgetting them.
“Alzheimer’s kind of rocked our world, and this drug rocked it back a little bit the other way.”
“Over time, I wasn’t able to continue doing as much work as quickly as I once did,” he instructed Fox News Digital throughout an interview.
His spouse of 40 years, Ann Domeck, had additionally began noticing some pink flags at house, however stated the very last thing they anticipated was Alzheimer’s illness.
The Domecks made an appointment at Cleveland Clinic for some cognitive testing, which led to a spinal faucet and, in the end, an Alzheimer’s prognosis in July 2019.
Domeck’s spouse, a TV information producer in Cleveland, left her job to assist look after her husband.
Given Domeck’s younger age and early-stage decline, a Cleveland Clinic physician instructed him he was the proper candidate for a scientific trial for a brand new Alzheimer’s drug.
For 18 months, Domeck went in for twice-monthly infusions, which lasted as much as six hours per session — with out figuring out whether or not he was getting the drug or the placebo.
A 12 months in the past, he was switched to the “open-label” Leqembi medicine, which he takes by way of injection at house as soon as per week.
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The Domecks suspect that John has been on the drug the whole time, as he has not declined a lot in any respect previously 4 years.
“Everyone’s like, he had to have been getting it before — he’s doing so well,” Ann Domeck stated. “His cognitive deficits have only increased minimally. After four years of Alzheimer’s, his scores should be a lot lower.”
“The fact that he’s still able to maintain his day-to-day activities and do the things that he enjoys is just so promising,” she added.
“John gets up and drives and golfs and reads every day,” she stated. “He got to see our son get married, and we’re planning to visit our daughter in Europe.”
Throughout the method, the Domecks stated they’ve been “astounded” by the compassion and assist of their care staff at Cleveland Clinic.
“They’re professionals, and they know their stuff about Alzheimer’s, but they’re also some of the nicest people we’ve ever met,” Ann Domeck stated.
While the couple perceive that Leqembi shouldn’t be a treatment, they’re extra optimistic now than they have been a couple of years in the past.
“Taking this drug is a long-term commitment.”
“Alzheimer’s kind of rocked our world, and this drug kind of rocked it back a little bit the other way,” stated Ann Domeck.
After initially being “shell-shocked” by the surprising prognosis, the Domecks really feel that the drug has given them time they have been instructed to not count on.
“I thank God every day that we got in this trial,” Ann Domeck stated. “It’s the best thing that’s happened to us.”
What to learn about Leqembi
While it is the primary Alzheimer’s drug to obtain full FDA approval in 20 years, Leqembi can be the primary medicine to focus on the underlying illness and never simply the signs, defined Dylan Wint, M.D., director of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, Nevada.
Leqembi is accepted just for the remedy of gentle cognitive impairment or early-stage Alzheimer’s for individuals who have been proven to have amyloid plaques within the mind.
“Lecanemab labels abnormal amyloid and tells the immune cells to remove those fibers from the brain,” Wint instructed Fox News Digital.
In testing, about two-thirds of patients went from amyloid constructive to amyloid destructive — and cognitive and purposeful decline was 27% slower for research individuals in comparison with these on placebo, the physician stated.
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“Taking this drug is a long-term commitment,” stated Wint. “Doctors need to make sure the patient can tolerate this rigorous regimen — intravenous infusions every two weeks for 18 months, interspersed with MRI scans and memory testing.”
More care and assist are wanted for folks with reasonable and extreme Alzheimer’s illness and their households, to not point out folks with different types of dementia, he added.
As with any medicine, lecanemab can have some uncomfortable side effects.
Most generally, it might trigger varied mind reactions, like swelling and bleeding, defined Manisha Parulekar, M.D., co-director of Hackensack University Medical Center’s Center for Memory Loss & Brain Health in New Jersey.
“Patients will have to stop the medication if these changes are noted on MRIs,” Parulekar instructed Fox News Digital. “People who are taking multiple blood thinners will not be able to take Leqembi.”
Headaches and confusion are additionally generally reported.
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Now that Leqembi is totally accepted, Medicare will cowl the medicine, with different insurance coverage corporations more likely to comply with, stated Parulekar.
“Without Medicare or insurance, the out-of-pocket costs are around $26,000 per year,” she famous.
Alzheimer’s illness includes many complicated elements, Wint famous, and the brand new medicine targets only one issue: amyloid.
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“While this new approach is excellent news, removing amyloid is not a cure,” he stated.
“We still need to find better symptomatic and disease-modifying treatments in the future.”
Leqembi is only when mixed with current remedies, stated Wint, together with symptomatic medicines, rehabilitation and household assist.