Leqembi infusions

SherryRS

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.

M1

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

@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

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

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

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.