New here~~~~

klhend703

I am not currently experiencing symptoms of Alzheimer's but have been placed in a clinical trial for "pre-clinical" Alzheimer's. I'm APOE 2/4 and have experienced 2 incidences of ARIA E. I'm concerned about continuing in the trials. Any input???? and HELLO everyone!

lfaust58

Notify the people running the study now! It might well be that you would be elimsted from the study. ARIA is nothing to fool around with.

Dorse

I was diagnosed with mild alzheimer's in July 2025, signed up for the kinsunla infusions. It's been 5 months of trying to get insurance approval even thought I have 2 excellent insurances that have NEVER failed to pay. I am approved by Lilly's and my neurologist for these Kinsunla infusions. I am now reconsidering getting the infusions. Has anyone who have been diagnosed with Alzheimer's made the difficult decision on NOT getting the infusions?

Dorse

I am 80 yrs. old, and the decision to get the infusions or not has been very difficult. I'm thinking about declining. I had the Pet Scan, MRI, cognitive test, etc. I went to another neurologist Dec. 2nd for for a 2nd opinion on the Alzheimer's diagnosis. Second opinion not much different from the first. She did a short cognitive test along with conversatiion. She said as far as she could see on " that " particuliar day she could see no cognitive problem. I am thinking that any memory issue I have could be age related. Yes, I had modest amount of amyloid plaque on the brain pet scan. The MRI showed some atrophy.

Dorse

Carole F

I am also going through the pre-authorization process and so far have been denied the Kisunla infusions. To make matters more complicated I am on the ACA and my insurance company is dropping all but two of my current doctors. Including the NP who is working with me on getting the infusions approved. So I’m switching to a new insurance company for two months until I get on Medicare.

It’s been frustrating but I don’t know what I can do to hurry up the process. I’m APOE3/4 and have had all the tests to diagnose me as having early stage Alzheimer’s.

LBC83

https://alzconnected.org/discussion/74762/new-here

I'm not understanding your comment that you were "placed in a clinical trial." Participants must sign paper to volunteer for clinical trials in the U.S., nobody can "place" anybody else in a clinical trial without the person's permission.

The purpose of the preclinical trials that I'm aware of (one with Kisunla and one with Leqembi) are to test the theory that starting on an anti-amyloid medication prior to having any cognitive decline may remove the amyloid plaque, resulting in prevention of the cognitive decline which has been a hallmark of AD.

ARIA is a common side-effect of anti-amyloid medications. In many cases of ARIA people have no symptoms (i.e. ARIA is only detected on an MRI scan), and in those that do have symptoms they are often mild. However, there are some people that develop serious cases of brain bleeding / swelling. Depending on the severity of the ARIA, either treatment is paused until the ARIA clears (in which case treatment can be restarted), or treatment is recommended to be terminated.

The risk vs reward decision really is up to you. Both my parents had dementia, so I am very familiar with the outcomes of the disease. When I was diagnoised, I did not hesitate to start on Leqembi. I have my 39th infusion next Monday. I have had zero reactions to the infusions or to Leqembi, and no ARIA.