Comment by rgmerk
13 hours ago
Not a doctor or medical scientist, but my understanding is a) the effectiveness of those anti-amyloid drugs as a preventative tool is unclear, and b) they have a pretty scary safety profile.
Clearly the goal is to be able to prevent the disease from progressing or slow it significantly, but are we really there yet even if we have a test?
As someone with a family member taking one of the newest drugs, I can attest that it does seem to meaningfully slow progression — from rapid decline nearly to a halt in my loved one’s case.
The risk of dangerous side effects seems to be much higher for those with APOE4 — before approving the treatment they required among other things a genetic test ruling that out. (There are several other genetic variants that predispose to Alzheimer’s, fwiw.) We were lucky and saw none of the concerning side effects.
Are we “there” yet? Where’s there?
The prognosis after this treatment is a massive improvement over what it would have been at this stage of progression if it had been reached even 5 years ago.
If you can detect the disease even earlier and halt progress at a point where you retain more cognitive function, that’s a huge win — and gives you time to wait it out a bit longer in hope that we’re able to develop a treatment that doesn’t just pause but can reverse progression.
Yeah, I doubt we’re ready yet to administer these drugs to people who are asymptomatic (not to mention how pricey they currently are). But for someone who likely has the genes for it, just _knowing_ would in some ways be a relief.
What drug is your family member taking? I have a family member that just received this diagnosis and I'm curious on their behalf what worked well in your experience.
Kisunla. Apparently my family member had about the best reaction to the drug you could hope for — from what I understand it’s not always quite so effective.
With the original course of treatment complete we then transitioned to a maintenance regimen of … I can’t remember the name off the top of my head but it’s the other one that’s similar but a bit less aggressive — they had originally presented it as one of the possibilities when we were deciding to start treatment. They’re also adding on a neuroplastocity-enhancing drug as a complement, along with some occupational therapy.
Best of luck to you and your family!