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Support Groups for people who has dementia

I was just diagnosed with MCI dementia. My doctor wants to start infusion therapy to breakup plaque on the brain.

Has anyone been on this therapy, and did you have any side effects?

Comments

  • Lumbar4
    Lumbar4 Member Posts: 13
    10 Comments
    Member

    My name is Akhila and I had infusion therapy at UCSF. What drug are they offering you? Trontinemab, or Donanemab?
    What is your name and where are you located? I’d be happy to tell you more.

  • GEH
    GEH Member Posts: 142
    100 Comments 25 Care Reactions 25 Likes Second Anniversary
    Member
  • LBC83
    LBC83 Member Posts: 237
    100 Insightfuls Reactions 100 Likes 100 Comments 25 Care Reactions
    Member

    To directly answer your question, yes, there are individuals who post in this group who have received one of the new FDA-approved anti-amyloid therapies. For example, myself! I have received 49 Leqembi infusions since June 2024 (40 initial dosing every 2 weeks, then 9 maintenance dosing every 4 weeks). I have had zero side effects.

    The Alzheimer's Association (the organization that sponsors this forum) has good information about the current treatment treatment options for Alzheimer's (see link below).

    As noted on their website, there are two FDA-approved anti-amyloid therapies: Leqembi & Kisunla. Another post mentions Trontinemab, that is stil undergoing clinical trials and is not (yet) FDA-approved.

    Briefly speaking, the two FDA-approved anti-amyloid treatments have two categories of side effects: Brain swelling and/or bleeding (referred to as ARIA), and infusion-related reactions. The former generally have no symptoms, although some people do have symptoms with ARIA, and a small minority have very severe cases which can require immediate medical attention. In contrast, infusion-related reactions tend to be mild (if they occur at all), and often can easily be mitigated by taking several medications prior to the infusion.

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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