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Leqembi infusions

We're looking into getting my DW on Leqembi infusions. Can anyone using this Med tell me if it works or causes more harm?

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  • Elizabeth607
    Elizabeth607 Member Posts: 30
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    My husband has had 20 infusions thus far. There is no improvement, but "perhaps" slowing progression. He is unable to initiate anything on his own- it all requires my assistance. He does still have is ALD's, though. We are waiting for the results of his latest MRI from yesterday to see if there is any brain bleed. His schedule got messed up because of holidays and the infusion clinic closing. He has had one infusion in about a 8 week period while we are awaiting transfer to another clinic.

  • SDianeL
    SDianeL Member Posts: 1,330
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    there is a search feature at the top where you can put in the word Leqembi and find all the posts related. Most posts say that there is no way to tell if it helped because there is no way to know if it slows progression because each person progresses at different rates based on many factors. Most also said that if there are no side effects to allow them to get the infusions.

  • zarzycpp
    zarzycpp Member Posts: 12
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  • zarzycpp
    zarzycpp Member Posts: 12
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    Thank you . I can't find the search feature ?

  • Elizabeth607
    Elizabeth607 Member Posts: 30
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    Click the magnifying glass in the top right corner.

  • PJ52
    PJ52 Member Posts: 36
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    LBC83 gave an excellent overview of Lequembi. My husband, in MCI stage, has APOE-4 homozygotes and had to stop after the first 3 or 4 treatments when the scheduled MRI showed ARIA-H (asymptomatic, thank God). Follow up also showed mild ARIA-E. He has another MRI scheduled this month, after stopping the treatment last summer. We decided to try the treatment because we do not fear death, especially knowing the future of this disease. But if your wife's genetic test does show she has the APOE-4 homozygotes, I would not recommend trying Lequembi because of the increased risk. We are hoping that the new Tau-reducing drug will be available soon, and before my husband's disease progresses too far.

  • BeckyT
    BeckyT Member Posts: 2
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    my DH has been diagnosed with a memory problem- degenerative cognition- rather than MCI and the doctor has suggested he begin Leqembi and has ordered an MRI to see if he is a candidate for it. She said they would be checking for scar tissue on the brain which would mean he couldn’t take it. Is this a drug for Alzheimer’s and MCI or is it also prescribed for pre-MCI? I’m confused about the diagnosis for him.

  • PJ52
    PJ52 Member Posts: 36
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    I’m not a medical professional, but that sounds very strange to me. Leqembi attacks the amyloid plaque of Alzheimer’s Disease, and if he hasn’t had the PET scan to diagnose that, I don’t know why your doctor would prescribe it. Get another opinion from a neurologist or geriatrician.

  • bjt84
    bjt84 Member Posts: 11
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    BeckyT - Leqembi and Kisunla carry an elevated risk of serious side effects for people with certain genetic markers. I suggest you have lab tests completed to determine if your husband carries the apoe4/e4 gene.

  • zarzycpp
    zarzycpp Member Posts: 12
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    Hi SD Dave

    You said you have one APEO 4 gene. Do you also have APEO 3 gene?

    My DW has both. Thank you for telling us about your 27 infusions - most feedback I'm have seen abot Leqembi infusions.

  • Goodlife2025
    Goodlife2025 Member Posts: 37
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    Agreed! SD Dave thank you for sharing it was very informational, giving me things to look for as we begin the treatments.

  • PoppyBevo
    PoppyBevo Member Posts: 2
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    First - THANK YOU! We’re having such a hard time finding any feedback on these therapies (leqembi & kisunla).

    My DW is in the same position as original poster. We’re trying to decide if it’s worth it. She is 72, in MCI stage (but maybe further along), with APOE 3/4. Neuro has prescribed Kisunla. DW reluctant and, frankly, the more I read the less enthusiastic I am.

    So, South Dakota Dave, the big question: Given your experience and what you know now, would you make the same choice?

  • abromfeld
    abromfeld Member Posts: 1
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    So glad I found this group and South Dakota Dave your information is so helpful. I have my mother scheduled to start Leqembi at the end of this week. I have her signed up to have the infusions done at an infusion clinic (First Choice Infusions in Boca Raton). I was considering switching to have her get the infusions as an out patient at Boca Regional Hospital so that she would be at the hospital just in case something went wrong. Any thoughts on whether one would be better than the other?

    Also, she is very frail. Does anyone know if that will have an impact on how she handles the treatment?

    She had the initial PET and MRI and does not have any of the problematic markers.

    thank you all for your help
  • South Dakota Dave
    South Dakota Dave Member Posts: 30
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    I'd suggest the hospital at least for the first couple of infusions. Getting through the PET and MRI shows a lot! But I am far from a Doc of any sort. We wish you folks the very best!

  • South Dakota Dave
    South Dakota Dave Member Posts: 30
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    Yes, I have the APOE 3 gene and the APOE 4 gene which is fine with MAYO Clinic. Wish you folks the best!

  • South Dakota Dave
    South Dakota Dave Member Posts: 30
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    Leqembi was all we had when I had Alzheimer's. I can't find anything better.

    A few days ago, we heard of a new FDA approval scheduled for Leqembi that will be available 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 into a new at-home procedure to administer Leqembi much faster and less costly and is showing the SC formulations resulted in 14% greater amyloid removal!

    Folks on this site are showing Kisunla as not having the new injector for at home delivery or the 14% of amyloid removal.

    Wish you folks the best!

  • BeckyT
    BeckyT Member Posts: 2
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    Thank you. the MRI came back looking fairly normal for his age and the geriatric doctor is now setting him up for a blood test, amyloid pet scan, and a referral to a neurologist, so I guess the mri was just a first step. She has, at this point, given him a diagnosis of mild dementia.

  • bjt84
    bjt84 Member Posts: 11
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    My wife shows relatively unremarkable info on multiple MRIs. The genetic info will come from the lab results. We were rejected for leqembi and kisunla by 2 prominent medical schools due to the side effect risk vs marginal benefit of slowing progression.

  • elesem
    elesem Member Posts: 3
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    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. The more we read, the more we find that whether or not to start Leqembi will be a very tough decision.


    My DH 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 the decision about Leqembi, 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 him the extra six months, he’d pay for those months with eighteen hard ones.

    My DH 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. IT'S A VERY TOUGH DECISION.

  • PJ52
    PJ52 Member Posts: 36
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    My husband is the same as yours, minus the additional rare disease. Knowing what we know now, after a few lecanemab infusions, we would not do them again. (He developed ARIA, which did resolve.) He was in excellent shape already, but did begin eating more vegetables and getting regular exercise, as recommended. It has been over 16 months since his MCI diagnosis, and there has been only slight progression. Although I believe he was in MCI stage several years before diagnosis. We are still hoping that Alzheon’s tablet ALZ-801 will become available before he progresses beyond the early stages. I. The meantime, we are able to travel and enjoy retirement.

  • PJ52
    PJ52 Member Posts: 36
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  • LBC83
    LBC83 Member Posts: 81
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    Sorry to hear about your difficulties. I understand the difficulty in making the decision. I only have a single APOE4 gene, so my incremental risk from ARIA was small in comparison to having both APOE4 genes. I elected to start on Leqembi, and have had no issues. I also only have a short commute to receive infusions.

    One option might be to wait for the subcutaneous version of Leqembi. Eisai (Japanese company that developed Leqembi) submitted an application to the FDA for approval of a maintenance dose of Leqembi using their new subcutaneous version of the drug in January 2025. The FDA set an action date of Aug 2025. Eisai has previously indicated that if/when the FDA approves the subcutaneous version of Leqembi for maintenance dosing, then they intend to submit another request to the FDA to allow for the subcutaneous version of Leqembi to be used for the initial dosing. That could be a long wait, but it might be an option for you.

    Another option might be consider Kisunla, the competitor drug to Leqembi. One of the benefits of Kisunla is that the infusions are only monthly. Another benefit is that Kisunla treatment can be stopped after PET scans show amyloid has been removed from the brain. Inquiring minds might ask why Leqembi dosing continues after amyloid plaque is cleared. Eisai replies that Leqembi is the only dual-acting treatment approved by the FDA. Leqembi clears "highly toxic" amyloid protofibrils "which can continue to cause neuronal injury even after amyloid-beta plaque has been cleared from the brain."

  • elesem
    elesem Member Posts: 3
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    Your situation does sound very similar to ours. There are so many studies out there for AD treatments, approaching it from completely different points of view. We're hoping for breakthroughs too. But in the mean time, enjoy life.

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