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klhend703
klhend703 Member Posts: 1 Member
in I Am Living With Alzheimer's or Other Dementia
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!

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  • lfaust58
    lfaust58 Member Posts: 38
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    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
    Dorse Member Posts: 82
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    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
    Dorse Member Posts: 82
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    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
    Dorse Member Posts: 82
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  • Carole F
    Carole F Member Posts: 1
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    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
    LBC83 Member Posts: 201
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    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.

  • Janey63
    Janey63 Member Posts: 8
    First Comment
    Member
    https://alzconnected.org/discussion/74762/new-here

    Wellcome! I am new here too - coming to learn about supporting my husband with early onset

  • GEH
    GEH Member Posts: 71
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    Hi Dorse and Carole,

    I am currently taking Leqembi for my Alzheimer's. I was offered a choice between taking of the two drugs Kisunla and Leqembi and chose the later because it not only helps to remove the accumulated plaques but also the entrails, intails or fibers or something that turn into plaques. There are some drawbacks, I go for infusion every two weeks for 18months. I will go for my fourth infusion in a couple of days. Infusions are a no brainer. They stick a needle in your arm, you read or sleep or watch TV for a little over an hour, they take the needle out, you go home. I am 68 yo, on Medicare and currently pay nothing for the Leqembi infusions. Behind the scenes my Dr. signed me up for the Leqembi EISAI patient support program. Below is the information I found on internet for you. This alternative drug may be another option for your current situation? Hope some of this information is helpful.

    How to Access Support:

  • LBC83
    LBC83 Member Posts: 201
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    The technical term for what Leqembi removes is amyloid protofibrils, along with amyloid plaque. Amyloid naturally occurs in the brains of everybody. When we sleep, the bodies waste removal system hauls the amyloid out of the brain for disposal. For reasons that are still unknown, in some people, the amyloid starts accumulating in the brain. First you might have single bits of amyloid floating around in your cerebral fluid, they are called amyloid monomers (the prefix mono means one, as in one string of amyloid). Then two bits stick together, they are called a dimers (prefix "di" for two), then trimers (prefix "tri" for three). After that they stop using prefixes and just refer to the strings of amyloid as amyloid protofibrils. Collections of amyloid protofibrils aggregate into what is called amyloid plaque.

  • GEH
    GEH Member Posts: 71
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    https://alzconnected.org/discussion/comment/260314#Comment_260314

    Thanks for jumping in with the specifics re: amyloid protofibrils..😊 ge

  • Dorse
    Dorse Member Posts: 82
    25 Care Reactions 10 Comments 5 Likes
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    https://alzconnected.org/discussion/comment/260064#Comment_260064

    I have been waiting 5 months to start the infusions that have been approved 5 months ago upon diagnosis of alzheimer's.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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