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Leqembi treatments for early dementia

Hello everyone. So my neurologist is sending me to a specialty clinic that does infusion Leqembi treatments. I was wondering if anyone here has been on it and if they have had any problems with brain bleeds or brain swelling. I'm trying to learn as much as I can about it so I can ask the right questions to the specialist. any help or advice is much appreciated

Calibird

Comments

  • BJH73
    BJH73 Member Posts: 3
    First Comment
    Member

    Have you noticed any difference in your thinking and has it slowed the progression?

  • South Dakota Dave
    South Dakota Dave Member Posts: 30
    10 Comments 5 Care Reactions 5 Insightfuls Reactions 5 Likes
    Member

    Sorry, it’s hard for me to tell. Of course, my neuropsychologist first evaluation was not good. But I am glad I have Leqembi.

  • khirsch
    khirsch Member Posts: 4
    First Comment
    Member

    Just starting treatments, do you feel different. Has it been worth it? Did you have any adverse side effects?

  • South Dakota Dave
    South Dakota Dave Member Posts: 30
    10 Comments 5 Care Reactions 5 Insightfuls Reactions 5 Likes
    Member

    My first infusion was rough; after that one we worked with Mayo Clinic, they advised us to take 2 Tylenol Extra Strength & 1 Claritin just before Infusion, then slowed the drip from 1 hour to 2 hours which we now do every infusion.

    I feel a bit more tired (I'm73), my head occasionally does feel different; I can get cold at night. but in general, I still do about the same things… cut down large pine trees, drive heavy equipment, etc.

    I think this is the only way to be better.

  • bbeasley
    bbeasley Member Posts: 1
    First Comment
    Member

    Hi all, this is Brent. I’ve been on lacenemab for about a year. It has been very helpful for me. My wife says she has her husband back.

  • Calibird
    Calibird Member Posts: 13
    Second Anniversary 5 Care Reactions First Comment
    Member

    thank you all for contributing your experiences. I'm nervous but I just found out my referral was approved through my insurance. Hopefully I'll get the treatments going within the month. thank you all. 💜

  • texeattle
    texeattle Member Posts: 4
    First Comment
    Member

    I would love to know as well. I want to talk to people that have done the infusions and see if they notice a difference. I go Wednesday to memory clinic to begin the process to see if I qualify. I was diagnosed 1/23/25.

  • JustLive
    JustLive Member Posts: 2
    First Comment First Anniversary
    Member

    My hudsband has been receiving Leqembi infusions for 6 months. He has had no bad side effects. Just gets a little tired. It was a long journey to start treatments because our health insurance played many games with us. If it weren't for our brilliant neurologist who fought for us we wouldn't have won our appeals!!

  • Bobscape
    Bobscape Member Posts: 6
    First Comment
    Member

    I am 75 years old and had my 19th infusion last week. I am under the care of Mount Sinai’s Wien Alzheimer’s Research Center in Miami. My condition is pre-clinical (I can pass the memory and cognitive tests) but PET scan shows a worrisome amount of Amyloid plaques. And there is family history. My expectation is that the Leqembi will slow disease progression. I have not detected any memory or cognitive changes since I began the program. My wife agrees. I had flu-like symptoms after the initial infusions. Now I might get a slight headache a few hours after the injection. Tylenol takes care of that. I still have trouble sleeping the night after the infusion. Very fitful.but no issues after that. I am fortunate for the early diagnosis and my goal is to keep more serious consequences at bay. I exercise (I love bike riding) and exercising my mind with word games and staying up to date and involved with technology. My diet is OK, but I will never pass on ice cream. I do not eat much red meat. I have stopped drinking alcohol. That was hard. I really enjoy a good Scotch in the evening. I am not shy about having Alzheimer’s, and will share my experiences freely. I believe folks have been too secretive about it, when sharing might raise awareness and help others.

  • texeattle
    texeattle Member Posts: 4
    First Comment
    Member

    Thank you for responding. It's good to hear other's stories.

  • texeattle
    texeattle Member Posts: 4
    First Comment
    Member

    THANK YOU for sharing. Do you notice if it is helping?

  • Calibird
    Calibird Member Posts: 13
    Second Anniversary 5 Care Reactions First Comment
    Member

    thank you for responding. I like hearing the diffferent experiences with this new drug. I'm hoping I qualify. My nuerologist believes that I will but I have to go to a different clinic because his office does not do the treatments.

  • Laura2020
    Laura2020 Member Posts: 3
    First Comment
    Member

    It was a roller-coaster of ups and downs trying to get approved for this treatment. My insurance has been a nightmare! Finally started treatment on January 15th. I've had 5 treatments. My first infusion was the hardest because of chills, tiredness and a headache. But as I continue on it definitely has eased up. It's been totally worth any risk.

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