I'm 45 and just got the news

ItsTotallyHer

I just tested positive for moderate to frequent corticol amyloid deposition. I don't even know how to feel right now. I went to my doctor for cognitive decline and memory problems, and the pet scan showed this. My doctor didn't tell me very much, so I've been researching online, and i can't stop crying. This was my biggest fear since watching my grandma decline as a child.

Laura2020

I can relate. I helped take care of my mom who had VD. It was awful watching her "disappear". Two years after she passed, I was diagnosed EO. My doctors have all said I'm fortunate to have caught it early because there are things that can be done to slow the progression. I started Infusion treatment (leqembi) this past January. Some days are better than others. But I take it day by day. I will say it definitely helps talking about it. I myself found help processing my diagnoses with a therapist.

I'm sorry you are going this.

LBC83

Well, yes, a pretty lousy "club" that you have joined. Like Laura2020, I also started on Leqembi after my AD diagnosis (I just had my 21st infusion). My Dad had some form of dementia, and my Mom probably had AD, so my diagnosis shouldn't have been a surprise. But still, I was hoping it the problem was something else. After a few days of despondency about the news, like you, I devoted my energies to researching information about treatment options. I'm hopeful that in my situation, I've started the Leqembi treatment early enough such that I might have results similar to those in the no/low tau group in the Phase 3 Leqembi clinical trial. Within this subgroup, 76% of those on Leqembi at least maintained the same cognition level over the 18 month trial. The message seems to be that regarding Leqembi effectivity, the earlier the treatment starts in the disease process, the better the outcome. The same general trend also seems true for Kisunla, the other FDA-approved anti-amyloid drug now available.

ItsTotallyHer

https://alzconnected.org/discussion/comment/240102#Comment_240102

Really? That's amazing! I read that it can slow the decline by up to 27% , but I don't really understand what that means.

michelleb65

Hi All - I am 59 and was just diagnosed. I am interested in everyone’s experiences with leqembi. I just had blood drawn for the genetic testing.