Alzheimer's: Wanting to connect with others

@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.

WHAT 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?

My husband was just taken off of the Kisunla after 3 doses (2 of them only 1/2 dose) at second and third infusion, about 1/2 way through, both times, his BP bottomed out.
First time 59/36.
Second time 67/41
EMS called both times.
He has now decided to try Leqembi. Time will tell…
Anyone else had this happen?

My husband (early stages) and I opted to try Kisunla. Lilly (manufacturer) has a great support and we were assigned a nurse that called us after infusions etc. because the drugs are so new, they have a very strict protocol as far as the MRI’s go. Unfortunately, my husband had adverse effects during the infusion. First one was OK, although he did have a headache 2 1/2 days later and we had to go to the ER. All was OK then. Second infusion halfway through his BP bottomed out. Our neurologist had had no patience. Have this happen. We gave a third infusion a try and the same thing happened so we have to take him off of Kisunla. We are now going to try Leqembi.
We are honestly not sure if it’s worth it or not? While it only seems to slow the process of Alzheimer’s by approximately six months. At least that’s what I’m reading. Hope it’s wrong. But at this point we’re willing to try.

My Mom is 60 and almost done with her 18 month Lequembi regimen. She repeats herself a lot but it has helped. She has lost body weight though. But appetite still pretty good. Any tips?

Just had the MRI and will wait to see what the next step is. Been on Donepezil 5mg for a year and it seems to help a lot. Probably will go with Leqembi soon...hope it helps. 79 and still kickin'...Good luck with your Mom. Early onset is tough.