Kisunla

teeebone

Hi everyone, I am brand new. Got my diagnosis of AD 2 days ago, and I am SCARED. I am 68 years old. I saw my neurologist yesterday after my PET scan and also had my blood work done yesterday now I'm in a holding pattern and he has recommended Kisunla... so I am hoping that someone can share with me how that journey is going for them

GEH

Hi teeebone,

Please don't be scared. You are not alone. We are all here for you and can totally undersrand what you are going thru. A diagnosis today is not like one even from even 5 years ago. There have been so many advances in treatments you will be amazed. I was 64 or 65 when I was diagnosed with Alzheimer's. My Doctor was great and hooked me up with a program to receive Leqembi infusions which I have now been taking for a little over a year now. My last PET Scan showed a very large percentage of plaque had been removed from my brain. When my Dr. offered me infusions, I did research and chose to take Leqembi over Kinsula due to the fact that it removes not only the plaque, but the protofibrils, which are the precursor to plaque. There are also several drugs that help with symptoms. I would highly recommend consulting with a neurologist at a Neurological Hospital if there is one near you. Please keep us posted on how you are doing.

Best to you.

GE

Beanie'sMimi0722

Hi and thank you for your post. I'm scared, too! I just got diagnosed yesterday with MCI and preclinical Alzheimer's. I'm 67 and also looking for information and support, as well as information about Leqembi, which my neurologist recommended. It seems this is a relatively new medication and I'm curious about how effective this is so far in real life from other folks on this platform. I appreciate GE's input which is very encouraging!

LBC83

I found Leqembi "effective" in the sense that after 49 infusions over about 2 years, my amyloid level was at 9 Centiloids. This is considered "amyloid clear", meaning that Leqembi removed much of the amyloid plaque that had accumulated in my brain over the preceeding decade or so. That is the prime function of both Leqembi & Kisunla - amyloid plaque removal.

Many patients are more concerned with how the drugs impact cognitive decline associated with Alzheimer's. That is a much more complex topic. It is unclear to me how I would determine my reductions in cognition without Leqembi infusions, and then compare that with my reductions in cognition I've experienced with treatment. The Phase 3 trials with Leqembi/Kisunla demonstrated they slowed cognitive decline associated with Alzheimer's, when comparing patients receiving treatment against a group receiving a placebo. This is great for the FDA in determining if they should approve the drug, but not so useful to individual patients who want to know how the drug might impact their particular situation.

AlethaC

I turn 66 this week. I will be getting my 6th Kisunla infusion this week. I do have one copy of the APOE4 gene. I don't see a change either way right now. I am blessed; so far, so good.