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Leqembi infusions

Have your persons been doing Leqembi infusions? Has it helped? What can you tell me about these infusions.

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  • jfkoc
    jfkoc Member Posts: 4,079
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    I suggest you do some google…there is a lot of info there…

  • Phoenix1966
    Phoenix1966 Member Posts: 239
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    edited January 7

    Here’s an article that was shared by @Crushed, which was released last October about some of the issues with the Leqembi trials.

    What Drugmakers Did Not Tell Volunteers in Alzheimer’s Trials

    From that article, “Early last year, the Food and Drug Administration approved Eisai’s Alzheimer’s drug, marketed as Leqembi, saying its modest benefit — a slight slowing of cognitive decline for a handful of months — outweighed its risks.”

    It appears that this drug only adds about 6 months or so of a slower decline if given early in the disease’s progress and women/people of color are more likely to suffer from the side-effects, which include brain bleeds.

    As @jfkoc suggested, please do some researching online regarding this drug.

  • South Dakota Dave
    South Dakota Dave Member Posts: 30
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    I was diagnosed with Alzheimer’s in April 2024 and decided to try Leqembi. Local Dr.’s failed us, so we decided to drive 635 miles to the Mayo Clinic in Rochester MN and stayed there a week. I and my wife found it the best thing we ever did. If we need help, our Mayo Dr’s will react quickly when needed.

    I was one of about 14 Alzheimer’s patients at Mayo. The required infusions started on January 2024; this January 2025 I now have 27 infusions each following two weeks apart, each one is in a hospital and completed in about 2 ½ hours.

    Recently, we heard of a new FDA approval scheduled for Leqembi that will be sometime after August 2025. I am much more hopeful now because we find Eisai (the owner) Leqembi has already been using their subcutaneous (SC) injector with Leqembi which gets us out of the infusion center every other week into a new at-home procedure to administer Leqembi much faster and significantly less costly and is showing the SC formulations resulted in 14% greater amyloid removal! I believe that has never been done.

    It may be helpful to know that anyone that has Medicare, I’d suggest getting a good health supplement also. Reason: Medicare pays for Leqembi (great!) but the required infusions are not covered. In my state (South Dakota USA), the cost for that is about $1600 each month. BUT our supplement insurance covers it 100% with only a $190 cost each month.

    We’ve learned a lot from the 27 infusions and would be glad to help with any questions or concerns about Leqembi.

    We really need more Leqembi patients to demonstrate its capabilities!

  • PoppyBevo
    PoppyBevo Member Posts: 2
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    I haven’t found much of value doing a google search. All I find are sponsored links from the makers, high-level overviews of what the drug is supposed to do, and a story or two from hospitals showing their first recipients. I’m not finding what I’m looking for, which is feedback from patients. I’ve only found those here on ALZConnected. Even then, there’s not much. South Dakota Dave has several very helpful posts about his experience. There are a couple of posts with a scathing NY Times article, and another couple detailing bad experiences.

    My ADLO is opposed to the infusion therapy. I was gung-ho, but the dearth of positive experiences, the risk of complications (some extremely serious, even fatal), and a best-case scenario of “well, you’re not getting worse” for a few months is making it very hard to present a compelling case. I’m not sure I’m on board with them.

  • Sitemsek
    Sitemsek Member Posts: 14
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    If this is the infusion treatment my wife's neurologists recommended, we turned it down. The risks seemed far too high for such little chance of benefit. Risks included 25% of participants experienced brain bleed or swelling and 5% actually died from it. With only 38% seeing any benefit we didn't want to take the risk. Each person needs to make their own informed decision.

  • starwood
    starwood Member Posts: 14
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    My DH and I were hopeful about this treatment, but by the time all the required testing and exams were completed, he had declined so much he was deemed ineligible. Neurologist instead suggesting a lumbar drain trial to screen for possible normal pressure hydrocephalus…which he just completed. Unfortunately, there was only minimal change in his symptoms; so, I think we’re done with testing and just back to a day at a time. I hope the treatments prove to be helpful for you.

  • zarzycpp
    zarzycpp Member Posts: 12
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    Dave, so after 27 + infusions , has Leqembi improved your condtion. We're waiting to hear back from medical team , when my DW can start the infusions. I still worried about the side effects for her. How many more infusions are you going to take - is it forever?

  • elesem
    elesem Member Posts: 3
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    I posted this comment on another conversation string, but it seems to fit better here.

    My DH was diagnosed with MCI due to AD six months ago. He is APOE4, likely to have the most risk of side effects with Leqembi. We’ve been in conversations with neurologists and doing research on our own. We're leaning toward turning down Leqembi, but it's a very tough decision.
    My husband has a different rare disease that recently required infusions once a month for six months. We learned a lot from that experience. Though his medications had no negative side effects, getting regular infusions was physically and emotionally difficult. His veins developed scar tissue after only four infusions making it increasingly difficult and painful to find the vein. Each infusion took over 2 hours (plus drive time and wait time) requiring doses of steroids and Benedryl to ease reactions to the drugs. We understand these extra measures are common for patients on Leqembi too. The thing that kept us going was measurable, positive results. Blood tests showed us exactly when he went into remission.
    Now, faced with this decision, it’s very hard for us to imagine eighteen months of infusions every 2 weeks, plus several MRI scans, and the risk of dangerous side effects - with no measurable results. The studies show the median amount of time Leqembi slows AD is six months, but there’s no way to detect or measure results for any one individual. He won’t feel any better. The AD will still progress. Even if they could guarantee my husband the extra six months, he’d pay for those months with eighteen hard ones.
    My husband is extremely physically fit. His AD symptoms are very mild. We want to guard his quality of life now, while he’s at his best and can enjoy it.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more