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Questions about Lequmbi

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lfaust58
lfaust58 Member Posts: 12
10 Comments
Member

I'm getting my 12th infusion in a couple of days. Everything is going ok- no side effects, feeling fine in general. With no advanced symptoms, I'm wondering if the Lequmbi is holding the progression of AD at the mild cognitive leveI. If and when I stop, I'm assuming that I'll be displaying more severe AD symptoms. Will infusions become a lifetime thing? In other words, will Lequmbi keep me from an ALF?

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  • Laura2020
    Laura2020 Member Posts: 17
    10 Comments 5 Likes
    Member

    I just had my 15th infusion. I'm also in the very early stages. I was told by my neurologist that if you stop with treatment the amyloid plaque will come back/continue to produce (which is why we have what we have). After 18 months of infusion treatment, you should continue with a maintenance regimen whatever that'll be by the time we finish with this round. There's a subcutaneous version is in the works for that. So, I guess my answer to your question is yes. At least prolong the advancement of Alz. I'm no doctor, but that's my understanding of it.

  • LBC83
    LBC83 Member Posts: 119
    100 Likes 100 Comments 25 Insightfuls Reactions 5 Care Reactions
    Member

    I'd say a definitive maybe, it depends on how early you started on Leqembi in your progression of AD. In the Phase 3 trial for Leqembi, Eisai (drug company primary responsible for Leqembi) has presented results showing that after 18 months of treatment, 76% of the people in the no/low tau subgroup maintained their same cognitive score. This is compared to 55% of those on placebo in the no/low tau group who maintained their same score. Tau is another biological abnormality in the brains of people with AD, separate and distinct from amyloid plaque. Monoclonal anti-body drugs like Leqembi & Kisunla target amyloid plaque, but they unfortunatelty do not perform so well at reducing tau. That is why combination therapy, pairing an anti-amyloid drug with an anti-tau drug may be the wave of the future for AD treatments.

    As noted by Laura2020, after 18 months of bi-weekly infusions of Leqembi, the standard recommendation is to continue with monthly maintenance infusions. Laura2020 also notes that at the end of this month, Eisai is awaiting FDA approval of a subcutaneous version of Leqembi for maintenance dosing. This fancy term means no more infusions. Instead, you would receive a weekly shot of Leqembi.

    Will all of this keep you out of an ALF (I had to look up the term in the commonly used abbreviations log :) )? Possibly. Again, one key factor may be how early you started on Leqembi. If you started later in the disease process, then Leqembi might slow down the disease process, but not keep you out of ALF. But if you started early, then there may be a chance that Leqembi could keep you out of ALF. Specifically, you might retain enough cognition until an anti-tau drug gets approved by the FDA, at which time you could then wipe out both the amyloid and the tau in your brain, thus giving you much better odds for staying out of ALF.

    This is at least my assessment of the situation, as a non-medical expert.

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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