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Should I stop Kisunla if my Centeloid goes down to 6.5

jaycey
jaycey Member Posts: 33
10 Comments 5 Care Reactions 5 Likes
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Hi All,

I'm 66 years old and was diagnosed with PCA (Alzheimer's that attacks the occipital cortex first) a little under 2 years ago, with a Centeloid score of 95.5. I started Kisunla around 9 months ago, but had to take a break for 2 months because I had an ARIA-E (Amyloid-related brain swelling).

Today I had another MRI and the edema has mostly resolved, and I had a PET scan, also today, that showed a Centeloid score of 6.5!

My neurologist is suggesting that I stop the Kisunla because I don't have a lot of Amyloid plaques, but that really worries me - I don't want them to come back. And I certainly don't feel cured (still issues with memory, simultagnosia & prosopagnosia (I know I know, these treatments slow & don't cure, but still).

Should I stop treatment ? I live too far away from a treatment center to switch to Liqembi, by the way.

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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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