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Consideration of the new Alzheimers drug (aduhelm)

My wife has been diagnosed with alzheimers (Nov 2019).  She will be retested soon to confirm that she is in the early stages of the disease, and so use of aduhelm is possible.

The issues are cost of course (unclear if Medicare will pay for anything), plus the side effects, plus questions from the clinical trials as to how well it actually works.

Can anyone share their thoughts on use of this drug?

Our neurologist thinks it is worthy of consideration, our primary care advises against it.

Thank you for any insights you may have.

Comments

  • Quilting brings calm
    Quilting brings calm Member Posts: 2,563
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    If you use the search button for either the brand or generic name, you will find prior discussions of it. 

    My thoughts are this: it’s only for early use such as for mild cognitive decline. By the time people get to this forum, their loved ones are exhibiting behaviors of moderate  decline( mild dementia) and are past the most effective point. Second, 40% of the clinical trial participants showed brain swelling ( brain injury).  That’s a possible cause of vascular dementia.  Third, it’s not really been proven to be that much more effective than anything else. 

    I wouldn’t touch that drug with a ten foot pole. 

  • Crushed
    Crushed Member Posts: 1,463
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    No FDA drug approval has ever created such anger on the part of highly qualfied experts

      

    But doctors appear uneasy about prescribing the drug. They're trying to grapple with a long list of unknowns, perhaps the biggest of which is whether Aduhelm actually benefits patients in their daily lives. Without more information, several major health centers have already decided to hold off administering the drug because of concerns about its safety, efficacy and the unusual series of events that led to its approval.

    https://www.biopharmadive.com/news/alzheimers-aduhelm-doctors-prescribing-aaic-biogen/604374/

  • M1
    M1 Member Posts: 6,788
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    Gramps, I agree with the other posters:  usefulness is not clear yet.  I doubt if Medicare will cover any time soon.  Only 1 in 10 people screened for the studies was considered early enough in the course of the disease to even be accepted for the studies--so as already stated, most poeple with noticeable symptoms are already too far gone.  I think your PCP is right.....
  • Jeff86
    Jeff86 Member Posts: 684
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    This drug ‘works’ by removing amyloid from brain cells.  But there are no studies to validate that such removal slows, never mind stops, never mind reverses, disease progress.

    The research conferences I’ve attended have impressed me with how little we still know about this disease.  There isn’t even agreement about whether plaques and tangles are a cause of AD or a result of AD.  If it’s a result, removal does nothing to address underlying disease.

    Color me skeptical.

  • dayn2nite2
    dayn2nite2 Member Posts: 1,136
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    The thing this drug DOES do is remove lots of money from your bank account.  Not much else.
  • Crushed
    Crushed Member Posts: 1,463
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    dayn2nite2 wrote:
    The thing this drug DOES do is remove lots of money from your bank account.  Not much else.

    Crushed -I wish Id said that ...

    Dayn2nit2 -  Dont worry Crushed you will

     Kudos 

      

  • M1
    M1 Member Posts: 6,788
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    Just an FYI, just read that the inspector general of HHS is going to investigate the circumstances of the FDA approval. I don't think any insurers are likely to offer coverage with that pending.

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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