New dementia drug ‘has given me hope’: Alzheimer’s sufferers reveal their tales

New dementia drug ‘has given me hope’: Alzheimer’s sufferers reveal their tales

The primary new Alzheimer’s treatment in 20 years was given full FDA approval earlier this month — and now two sufferers who participated within the medical trials have spoken about their private expertise with the drug to Fox Information Digital.

Lecanemab, bought beneath the model identify Leqembi, works by lowering amyloid plaques within the mind, which is without doubt one of the hallmarks of Alzheimer’s.

In early trials, the drug was proven to sluggish cognitive decline by 27%.


Two Ohio sufferers who participated within the trials lately spoke to Fox Information Digital about how Leqembi has impacted their Alzheimer’s journeys — and altered their lives.

Joan Murtaugh’s story: ‘It’s not a miracle, but it surely’s gradual progress’

Joan Murtaugh, 77, lives in Lakewood, Ohiotogether with her husband, Larry.

She first began noticing reminiscence issues practically seven years in the past, simply after her seventieth birthday.

“Timing is every little thing,” her husband, Larry Murtaugh, instructed Fox Information Digital in an interview. “It was Joan who made an appointment on the mind heart clinic.”

In 2017, Murtaugh was recognized with gentle cognitive impairment.

The subsequent yr, after having a 3-D MRI and spinal faucet, she discovered that she had an enzyme in her spinal fluid that predicted a 65% probability of getting Alzheimer’s in her lifetime.

Alzheimer's patients

Two Ohio sufferers who participated within the trials spoke to Fox Information Digital about how Leqembi has impacted their Alzheimer’s journeys. On the left, affected person Joan Murtaugh is pictured with husband Larry Murtaugh; on the precise, affected person John Domeck is proven with spouse Ann Domeck. (Joan & Larry Murtaugh/John & Ann Domeck)

In February 2020, Murtaugh acquired some good news: She was eligible to take part in a double-blind examine trial for a brand new drug, Leqembi, at Cleveland Clinic in Ohio.

“I assume it was as a result of it was apparent there was some plaque in my mind, which they realized was inflicting Alzheimer’s,” Murtaugh instructed Fox Information Digital.

This was Part 3 of the medical trial, which included some 1,800 folks worldwide. Murtaugh was one in every of solely eight folks to obtain the drug at Cleveland Clinic.

“I’m totally practical — I’m nonetheless doing every little thing I at all times did.”

A couple of months later, she started getting twice-monthly infusions of what was both a drug or a placebo.


To at the present time, Murtaugh nonetheless doesn’t know if she was getting the actual factor or a placebo — she gained’t discover out till the final individual has acquired the final dose of the double-blind examine. But she stated she “has a hunch.”

“I’m totally practical — I’m nonetheless doing every little thing I at all times did,” Murtaugh stated.

“I can nonetheless drive my automobile, shop, garden, cook, read — all these issues.”

Joan & Larry Murtaugh

“Timing is every little thing,” husband Larry Murtaugh instructed Fox Information Digital in an interview in regards to the Alzheimer’s analysis of his spouse, Joan Murtaugh. (Joan & Larry Murtaugh)

All through the whole trial interval, Murtaugh stated she by no means received 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.

Though Leqembi has been linked to some potential unwanted effects, she skilled none.

“Whenever you first hear the phrase ‘Alzheimer’s,’ a chill goes by you — it’s such as you’re wanting right into a darkish abyss,” Murtaugh stated.

“However this new drug provides nice hope.”


In September 2021, the trial portion of the examine ended and Murtaugh was eligible to start out receiving the actual medicationwhich she nonetheless takes at the moment.

As an alternative 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 suggests Murtaugh will get it without spending a dime — and she or he hopes that may proceed for the foreseeable future.

Whereas the Murtaughs understand that the long run could carry challenges, they regard Leqembi as “a ray of sunshine in a really cloudy sky.”

Joan Murtaugh

All through the whole trial interval, Joan Murtaugh, proven right here, stated she by no means received any worse; she stated she simply skilled the identical gentle signs she’d had earlier than beginning the drug. (Joan Murtaugh)

Paired with different approaches comparable to 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, however we’re on the precise path and we’ve got the precise crew at Cleveland Clinic,” stated Larry Murtaugh.

“It’s not a miracle, but it surely’s gradual progress.”

John Domeck’s story: ‘I thank God each day’

A retired legal professional in Aurora, Ohio, John Domeck was simply 57 years outdated when he was recognized with Alzheimer’s.

The folks round him — his colleagues on the legislation 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 put in writing issues right down to keep away from forgetting them.

“Alzheimer’s form of rocked our world, and this drug rocked it again somewhat bit the opposite approach.”

“Over time, I wasn’t in a position to proceed doing as a lot work as shortly as I as soon as did,” he instructed Fox Information Digital throughout an interview.

His spouse of 40 years, Ann Domeck, had additionally began noticing some purple 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 analysis in July 2019.

John Domeck and family

John Domeck, a retired legal professional in Aurora, Ohio (second from left), was simply 57 when he was recognized with Alzheimer’s. He is pictured right here along with his household. (John & Ann Domeck)

Domeck’s spouse, a TV information producer in Cleveland, left her job to assist take care of her husband.

Given Domeck’s younger age and early-stage decline, a Cleveland Clinic physician instructed him he was the right candidate for a medical 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 yr 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.


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.

“Everybody’s like, he needed to have been getting it earlier than — he is doing so properly,” Ann Domeck stated. “His cognitive deficits have solely elevated minimally. After 4 years of Alzheimer’s, his scores ought to be rather a lot decrease.”

“The truth that he’s nonetheless in a position to keep his day-to-day activities and do the issues that he enjoys is simply so promising,” she added.

John Domeck

John Domeck is pictured right here getting an infusion of both the Alzheimer’s drug or the placebo in the course of the medical trial. (John Domeck)

“John will get up and drives and golfs and reads each day,” she stated. “He received to see our son get married, and we’re planning to visit our daughter in Europe.”

All through the method, the Domecks stated they’ve been “astounded” by the compassion and assist of their care crew at Cleveland Clinic.

“They’re professionals, they usually know their stuff about Alzheimer’s, however they’re additionally a number of the nicest folks we have ever met,” Ann Domeck stated.

Whereas the couple perceive that Leqembi is just not a remedy, they’re extra optimistic now than they have been a couple of years in the past.

“Taking this drug is a long-term dedication.”

“Alzheimer’s form of rocked our world, and this drug form of rocked it again somewhat bit the opposite approach,” stated Ann Domeck.

After initially being “shell-shocked” by the sudden analysis, the Domecks really feel that the drug has given them time they have been instructed to not count on.

I thank God each day that we received on this trial,” Ann Domeck stated. “It is the most effective factor that is occurred to us.”

What to find out about Leqembi

Whereas 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 Middle for Mind Well being in The Vegas, Nevada.

Leqembi is authorized 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.

John & Ann Domeck

John Domeck (far proper) is pictured along with his household at his daughter’s school commencement. All through the entire course of, the Domecks stated they’ve been “astounded” by the compassion and assist of their care crew at Cleveland Clinic. (John & Ann Domeck)

“Lecanemab labels irregular amyloid and tells the immune cells to take away these fibers from the mind,” Wint instructed Fox Information Digital.

In testing, about two-thirds of sufferers went from amyloid constructive to amyloid unfavourable — and cognitive and practical decline was 27% slower for examine members in comparison with these on placebo, the physician stated.


“Taking this drug is a long-term dedication,” stated Wint. “Medical doctors want to verify the affected person can tolerate this rigorous routine — intravenous infusions each two weeks for 18 months, interspersed with MRI scans and memory testing.”

Extra 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.

John Domeck

The brand new Alzheimer’s drug has enabled John Domeck (above left) to proceed to take part within the actions he enjoys. (John Domeck)

As with all medicine, lecanemab can have some unwanted effects.

Mostly, it could trigger varied mind reactions, like swelling and bleeding, defined Manisha Parulekar, M.D., co-director of Hackensack College Medical Middle’s Middle for Reminiscence Loss & Mind Well being in New Jersey.

“Sufferers should cease the medicine if these adjustments are famous on MRIs,” Parulekar instructed Fox Information Digital. “People who find themselves taking a number of blood thinners will be unable to take Leqembi.”

Complications and confusion are additionally generally reported.


Now that Leqembi is totally authorized, Medicare will cowl the medicine, with different insurance coverage firms prone to comply with, stated Parulekar.

“With out Medicare or insurance coverage, the out-of-pocket prices are round $26,000 per yr,” she famous.

Alzheimer’s illness includes many complicated elements, Wint famous, and the brand new medicine targets only one issue: amyloid.


“Whereas this new strategy is good news, eradicating amyloid is just not a remedy,” he stated.

“We nonetheless want to seek out higher symptomatic and disease-modifying therapies sooner or later.”

Leqembi is only when mixed with current therapies, stated Wint, together with symptomatic medicines, rehabilitation and family support.

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