Have any questions about how to use the community? Check out the Help Discussion.

Leqembi infusions

Hello. My DH has been diagnosed with Alzheimers and recently began receiving Leqembi infusions every two weeks. I would appreciate hearing from any other caregivers who are undertaking this treatment. I'm looking for support and advice or tips.

Comments

  • M1
    M1 Member Posts: 6,788
    1,500 Care Reactions 1,500 Likes 5000 Comments 1,000 Insightfuls Reactions
    Member

    Welcome to the forum….I'll be interested to see what responses you get. Very few folks here have received Leqembi so far several have considered it but few have participated. New frontiers….

  • harshedbuzz
    harshedbuzz Member Posts: 4,521
    Seventh Anniversary 1,000 Likes 2500 Comments 500 Insightfuls Reactions
    Member

    @SherryRH

    Hi. I don't recall many posts about this new medication. We have just started the process of evaluating mom for dementia and I wonder if we get to a point where she is offered infusions. From what little I've read; they aren't necessarily effective for women compared to men. But I know mom, she'll want to do this. Maybe I can cut a deal with her retinal specialist and do them at the same time she gets her ocular injections.

    How is it going for you and your DH?

    HB

  • Drew Reynolds
    Drew Reynolds Member Posts: 1
    First Comment
    Member
    hello Sherry, my wife was recently diagnosed with EO and we are just now considering the infusions. I am for trying them, but she is reluctant, due to the significant time commitment. The clinic is over an hour away and the thought of going every 2 weeks for up to 18 months is daunting. We go to see the neurologist next week to make the decision. I’d be very interested to hear about your experience so far.
  • SherryRS
    SherryRS Member Posts: 14
    10 Comments 5 Likes
    Member

    Hello Drew Reynolds

    My DH has now had his third infusion of Leqembi and so far so good. I'm sorry your nearest potential infusion site is an hour away. One of the things I have learned from the Leqembi website is that a patient can select a different infusion site to use when away from home. As I understand it, the patient or care giver needs to do the research to find an alternate site and then ask the doc to send an order for an infusion at that site. I was investigating this because we live in the midwest and usually winter in Florida.

    Is there the possibility that you might find a Leqembi infusion site closer than an hour away? Even nearby infusions do take time. We were at the infusion site two hours the other day.

    Good luck to you and your wife as you discuss and explore options.

  • GeoBuck
    GeoBuck Member Posts: 1
    First Comment
    Member
    Hello Sherry, Drew Reynolds

    My DW has been taking Leqembi infusions for more than a year. She has single (hetero) APOE4. Our experience has been very positive, no side effects. She is younger onset, early stage/MCI. She was one of the first in our state to receive Leqembi, following its FDA approval.

    At first, we travelled two hours each way, every two weeks. We made a day of it, and it usually took the whole day. But, in January, a local option opened up. So now, we spend 2 hours every 2 weeks, and are home by mid-morning.

    There is a website to locate infusion centers: https://leqembilocator.com/

    Wishing you the best of luck.

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