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Questions about Lecanemab

B Lynn
B Lynn Member Posts: 6
Third Anniversary First Comment
Member
in Caring For a Spouse or Partner

Hello,

Is anyone on this site receiving Lecanemab infusions or know someone who is or has received it. The doctor has offered this therapy to my husband. I am interested in hearing the experiences of others who are or have received this infusion. Thank you.

Comments

  • trottingalong
    trottingalong Member Posts: 723
    Ninth Anniversary 500 Likes 500 Comments 250 Care Reactions
    Member

    I don’t know if you are on instagram or not, but there is a family whose husband/dad is on it. He’s 57 I believe and they post videos about his progression. His wife has spoken about the infusions. Anthony_vs_alzheimers

  • MaryMN
    MaryMN Member Posts: 16
    10 Comments 5 Insightfuls Reactions 5 Care Reactions 5 Likes
    Member

    If you go to the "Discussions for People Living with Dementia" section of the website, there are several discussions.

    My DH has received 31 infusions and has never experienced any side effects. It's hard to know how much they are delaying his progression, but he feels any delay is worth it.

  • B Lynn
    B Lynn Member Posts: 6
    Third Anniversary First Comment
    Member
    https://alzconnected.org/discussion/comment/251677#Comment_251677

    Thank you so much for that information. I don’t go on Instagram often but I will certainly look for their posts.

  • B Lynn
    B Lynn Member Posts: 6
    Third Anniversary First Comment
    Member
    https://alzconnected.org/discussion/comment/251684#Comment_251684

    Thank you so much! I would not have thought to look there!

  • SDianeL
    SDianeL Member Posts: 2,054
    500 Insightfuls Reactions 500 Likes 1000 Comments 500 Care Reactions
    Member

    You can also search on this forum. The search feature is at the top right. Just put in Lecanemab.

  • Elizabeth607
    Elizabeth607 Member Posts: 36
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    Member
    https://alzconnected.org/discussion/73886/questions-about-lecanemab

    My husband has had 35 of 36 infusions. Once he completes the 36th infusion, then they will be scheduled monthly instead of biweekly. He has had no side effects. Does it work? I guess so, sort of. The Neurologist told me at his appointment last week, that if he does not receive the monthly infusion, he will decline quicker. With that being said, he has continued to decline since the first injection, perhaps just not as quickly. Since his last Neurologist appointment in May to last week in August, there is noticeable decline and the Doctor said that he will need "Nursing Home Level Care" soon. We will reevaluate it at his appointment in November unless "something" happens in the meantime. His mobility is very poor and is at risk for falls. However, he seems to be content and/or happy. Just plugging along without a care in the world.

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
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