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74 MCI/ALZ

Hello. I am grateful to be able to communicate with others in this forum. I received a confirmed diagnosis on Dec. 2, 2025. I am at an early stage, so I'm taking the time to do thorough research. My local neurologist has suggested Kisunla; I've been approved to start it.

Kisunla was only recently approved in the EU and, as of this writing, has not been approved in Switzerland. Switzerland has a robust drug approval process. (I used to live in Switzerland. My son was treated for multiple sclerosis there.)

I watched a video from BrightFocus that mentioned some of the treatments in the pipeline may not be available to patients who have already received anti-amyloid infusions.

The benefits of the anti-amyloids at this stage of my diagnosis might not outweigh the ultimate benefits of Trontinemab which has shown very positive results in Phase 1 and Phase 2.

My question to the group: Should I enroll in the 3rd Phase trial with the new Roche drug Trontinemab instead? Your thoughts?

Thank you very much!🤗

Kind regards,

Debbie

Comments

  • JJ401
    JJ401 Member Posts: 398
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    None of the current infusions have been out long enough to give you a definite answer. Asking to compare the current infusions to something new is, in my view, impossible at this point.
    It’s a personal coin toss.
    If you said you were waiting for Trontinemab approval, I’d say try an approved infusion as approval of Trontinemab is several years off. However, if you are approved for a phase 3 trial, it’s a much harder question. Only you, with the help of your family, can decide.

  • jaycey
    jaycey Member Posts: 19
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    Member
    edited January 12

    So far as I understand it, Trontinemab works in the same way Donanemab (Kisunla) does. That is, it binds to the amyloid proteins in order to clear them. All of these anti-amyloid only work if you start them early - as early as possible, as dead neurons are hard to resuscitate (if even possible).

    So, I would say that, given the positive impact of Donanemab and the recent article by the TrailBlazer group showing continued positive effects 1 year after treatment ends, I'd go with that and start as soon as you can.

    I should add that I chose not to go with a trial, but to receive Donanemab in a neurologist's office as it allows me to also try other treatments at the same time. For example, I also use Exelon patches. if I were in a trial, that would be impossible.

    But, as others have said, you need to weigh the issues yourself.

  • LBC83
    LBC83 Member Posts: 203
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    One other point others haven't mentioned. You are comparing the proverbial apples and oranges. Option #1 would be starting on an anti-amyloid medication which was shown in a clinical trial to slow down cognitive decline and remove amyloid plaque. Option #2 would be to participate in a clinical trial with Trontinemab. By definition, clinical trials are composed of two groups of people: those receiving the active drug and those on placebo. This is a fundamental groundrule for clinical trials, as the governement agencies which review/approve drug applications wants evidence that the drug actually works.

    Before starting on Leqembi, I was considering participating in a trial pairing an anti-tau drug with an anti-amyloid drug. At the time, some ethicists had noted that it might be better to compare those on both the anti-tau and anti-amyloid drugs with those soley on the anti-amyloid drug.

    In today's world, I wonder who would want to sign-up for a trial with Trontinemab, if there was a chance they might receive a placebo. I'm no expert, but I wonder why somebody proposing new anti-amyloid medications (such as Trontinemab) doesn't compare the new drug (Trontinemab) with Leqembi or Kisunla during the trial, as opposed to comparing Trontinemab with a placebo?!?

    To further complicate your decision, as I recall from the Alzheimer's Association International Conference in Toronto in the summer of 2025 (I was in attendance), Trontinemab showed faster amyloid clearance compared with Leqembi/Kisunla with lower ARIA rates. So better performance with Trontinemab with reduced risk. This is in part due to Roche using their "Brain Shuttle" technology to transport the treatment drug across the brain/blood barrier. This resulted in a factor of 10 increase in the concentration of the active drug in the brain.

    But again, you might be getting a placebo in the trial, which surely isn't going to help your situation.

  • Dorse
    Dorse Member Posts: 82
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    Member

    Welcome to our support group. I was diagnosed July 14, 2025. Alzheimer's is a difficult diagnosis to hear for sure. I've had 6 mo. of coming to terms with the diagnosis, not easy. I declined the infusions, but considering them again after starting over with a new neurologist.

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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