← Return to Alzheimers: Anyone else out there living with dementia?

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@peggyrk

Thank you for your support and suggestions! I—despite my trials and tribulations connected with Lequembi side effects—will continue my course of action. I believe that this path offers the best path available towards meeting my goals.

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Replies to "Thank you for your support and suggestions! I—despite my trials and tribulations connected with Lequembi side..."

Hi Peggy and thanks for sharing your experiences. I have recently received a positive amyloid PET scan and had a previous diagnosis of MCI. I have been told that I qualify for the Lequmbi protocol. That has been put on temporary hold since I also have/had Afib which resulted in a very recent cardiac ablation and subsequent blood thinners that I would have to remain on indefinitely. With those blood thinners, I am then disqualified for the amyloid drugs because of potential brain bleeds. I also have one copy of the APOE4 gene, which gives another potential negative wrinkle to the treatment. I will have to at some point make choice between stroke risk by stopping blood thinners or inability to receive this treatment for amyloid reduction. I've researched quite a bit of the studies and yes my understanding is you can have significant amyloid load and no dementia. However, the studies show that the location of the amyloid is what affects dementia progress (cortical involvement and in particular parts of the brain that show gray/white matter border elimination). I have copies of my amyvid imaging and have compared those on radiological sites/studies to show how they diagnose positivity. It has helped me get through some of the clutter which comes with the positive imaging declaration. That imaging, together with other clinical confirmation (neuropsych testing, biologic results) gives a pretty clear pathway for deciding personal clinical choice. I do appreciate you discussing the side effects. It has helped me prepare for that decision that I will make in the next few months. Take care and best wishes! Carl