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Any experiences with Aduhelm?

MEsad
MEsad Member Posts: 3
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in Caring For a Spouse or Partner

My DH did not react well to Donepezil. We are seriously considering trying Aduhelm infusions. Since it is so new, there is not a lot out there about experiences with it. I know that we don't know what it will do long term, but does anyone have any short term experience with it? Our insurance has denied it, so it will be costly and there will be a lot of logistics involved to make it happen. Part of me wants to try any and everything possible to make things better for him, but part of me worries that it might just make things worse given his poor reaction to medications and the stress he gets about doctor visits and procedures. And, unfortunately, he isn't able to help me decide as he gets confused about what it is.

Comments

  • M1
    M1 Member Posts: 6,788
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    Im not aware that we've had anyone on the boards who has used it yet. Any chance you could get him enrolled in a study? Of course that always runs the risk of receiving a placebo....unless everyone in the study was receiving the real drug and they were controlling for some other factor. It will be very costly for sure.

  • ThisLife
    ThisLife Member Posts: 267
    Fourth Anniversary 100 Care Reactions 100 Comments 25 Insightfuls Reactions
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    No experience with the drug. However, H was having to have weekly phlebotomies for hemochromatosis. A new experience every time he had it done. No understanding why it had to be done even with the simplified explanation. Lots of agitation during and for the next day. Just depends on what you believe your DH will tolerate.

  • Ed1937
    Ed1937 Member Posts: 5,095
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    You might hear a lot about brain bleeds, but from what I've read a very high percentage of bleeds are so minor that they are not noticeable at all. There are also major bleeds, but they are very rare from what I've read. This medication seems to have a lot going for it, and that's the hard part about making a decision about trying it. Sorry I don't have anything more for you.

  • hnggirl
    hnggirl Member Posts: 1
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    We are new to all of this but my husbands neurologist just recommended this. He will have to have a spinal tap for conformation of the disease. In the meantime he was just given donepezil. We haven't tried it yet. I am so scared to make all these decisions for my husband.
  • harshedbuzz
    harshedbuzz Member Posts: 5,027
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    This article is a more general discussion of the newer treatment options; especially of Leqembi which is newer and thought by many to be a better option especially for men.

    https://www.vox.com/policy/2023/7/7/23784663/alzheimers-drug-lecanemab-leqembi-full-fda-approval

    HB

  • Garyh69
    Garyh69 Member Posts: 1
    First Anniversary First Comment
    Member

    Have you considered the Rivastigmine patch? My LO could not take Donepezil but the patch works great.

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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