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Alzheimer's: Wanting to connect with others
Brain & Nervous System | Last Active: May 2 7:33am | Replies (18)Comment receiving replies
In September 2024, I was given a PET CT scan which identified that I have amyloid deposits which my provider say is a diagnosis of early-stage Alzheimer's disease.
My provider prescribed a drug named Donanemab (marketed as Kisunla) which is said to target amyloid plaques in the brain aiming to slow cognitive and functional decline.
However, a side effect of Donanemab is possible brain swelling or bleeding (ARIA) and the risk of swelling is higher in individuals carrying the APOEG gene. I'm currently trying to get a blood draw that will be used to see if I have the APOEG gene but getting the blood test is turning out to be a challenge (I've been to 3 different labs). The drug is new which maybe is why the health system here in Seattle is struggling to perform the blood test.
Wondering if others who are newly diagnosed with early-stage Alzheimer's are experiencing challenges with some of the newer tests and treatments.
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My husband has recently been diagnosed with Alzheimers. We found out about the APOE gene from a "23 and me" genetics test we did years ago. It's important to find out if you have 1 or 2 APOE genes. My husband has only the one APOE4 so he is apparently not as high a risk as someone who has 2 APOE genes and we're going to go with the Kisunla infusions once a month for 18 months. His neurologist said that if he had both APOE genes, he would not suggest that we do the Kisunla infusions. It's a tough decision anyway. Not sure what the infusions will "buy" him. Time, I hope. Hope this is helpful.