@bryanbay I am sorry that you are having to face this disease.....and further can't seem to get the diagnostic work-up that you need to start on medication. I would imagine that your physician should become very active in seeking a facility that does this type of serology. Being in Seattle one would think that there are large teaching facilities that are familiar with early diagnosis Alzheimer's. I'm not as familiar with the West Coast Medical Centers as with the East coastal areas. With that said, I'm sure the Los Angeles area would have large medical/research centers. ie Stanford. Perhaps the drug company can be of assistance, Alzheimer's Association would be glad to help. If I think or find anything I will let you know. You don't need to be flying solo on this! Best Wishes!
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.
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.
My understanding is that there are two new drugs that reduce amyloid plaque in the brain that may slow down the progression of Alzheimers. They are Kisunla and Leqembe and are given by infusion. Kisunla is given once a month for 18 months. Leqembe every 2 weeks. They have only been on the market for one year and are definitely not a cure. Scary but my husband and family want to take the chance that it will help. Lots of unknowns and potential bad side effects such as brain bleeds so 5 MRI’s in the first 6 months.
My understanding is that there are two new drugs that reduce amyloid plaque in the brain that may slow down the progression of Alzheimers. They are Kisunla and Leqembe and are given by infusion. Kisunla is given once a month for 18 months. Leqembe every 2 weeks. They have only been on the market for one year and are definitely not a cure. Scary but my husband and family want to take the chance that it will help. Lots of unknowns and potential bad side effects such as brain bleeds so 5 MRI’s in the first 6 months.
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@bryanbay I am sorry that you are having to face this disease.....and further can't seem to get the diagnostic work-up that you need to start on medication. I would imagine that your physician should become very active in seeking a facility that does this type of serology. Being in Seattle one would think that there are large teaching facilities that are familiar with early diagnosis Alzheimer's. I'm not as familiar with the West Coast Medical Centers as with the East coastal areas. With that said, I'm sure the Los Angeles area would have large medical/research centers. ie Stanford. Perhaps the drug company can be of assistance, Alzheimer's Association would be glad to help. If I think or find anything I will let you know. You don't need to be flying solo on this! Best Wishes!
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.
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3 ReactionsWHAT EXACTLY ARE THESE INFUSIONS?
WHAT DO THEY PURPORT TO DO?
My understanding is that there are two new drugs that reduce amyloid plaque in the brain that may slow down the progression of Alzheimers. They are Kisunla and Leqembe and are given by infusion. Kisunla is given once a month for 18 months. Leqembe every 2 weeks. They have only been on the market for one year and are definitely not a cure. Scary but my husband and family want to take the chance that it will help. Lots of unknowns and potential bad side effects such as brain bleeds so 5 MRI’s in the first 6 months.
One additional piece of information from our neurologist is that the infusions only work when dementia is in the very early stage.
HOW DANGEROUS ARE THEY?