Thinking about infusions.... Leqembi or Kisunla??

I'd concur with much of what lfaust58 posted. I had my 31st infusion of Leqembi last Monday. At the 30,000 ft level in comparing Leqembi & Kisunla, you are trading off the following:

ARIA stands for Amyloid-Related Imaging Anomaly. It may sound innocent but this is a dangerous side effect - brain swelling and brain bleeding.

As both Leqembi & Kisunla utilize infusions to get the drugs into your body, people receiving the infusions can have what are referred to as "infusion-related reactions". Examples are those listed by lfaust58 in their post. They have nothing to do with the active drug, again they are related to the artifact of getting an infusion.

If you like to watch videos, I'd recommend the video at the link below. Dr. Paul Aisen. He is a Professor of Neurology and Director of the Alzheimer’s Therapeutic Research Center at the Keck School of Medicine at USC in Los Angeles. In the interview, he directly compares various aspects of Kisunla & Leqembi. The video takes a full hour, but I found it worth my time. Dr. Aisen "gets it", in the sense that he understands what those of us on the medication are going through. During the video, he addresses questions from the audience, which are similar to questions you raised. For example, the question about changes in cognition for those on either drug. The title slide in the graphic below is misleading, as again, the video covers both Leqembi & Kisunla.

Another imporant aspect, which is addressed by Aisen, is APOE status. The risks of these drugs vary by how many APOE4 alleles you have (lower risk of ARIA if you have zero APOE4 alleles, risk goes up some if you have one copy of the APOE4 gene, risk goes up alot if you have two copies of the APOE4 gene).

I have not but have been following it for some time…I would ned to do considerable research before doing either.

I do have a friend getting infusions who has no real opinion as of yet as to the effectiveness.

Judith

DH here is having Kisunla infusion #8 this week. The infusion itself is only about a half hour. For the first few he had to stay an additional half hour to check for an immediate reaction. Now they let us go right after it's done. What I do notice is that he naps after we get home.

So far no brain bleeding has showed up on the MRIs.

Is it helping? His functioning is the same, But, he's had a long slow decline, so who knows.

One comment about the treatment duration for Leqembi & Kisunla. Both drugs clear amyloid plaque from the brain. So one might wonder why the recommendation is to stop Kisunlaq after amyloid plaque is gone, while the recommendation for Leqembi is to continue treatments.

To answer the question we have to get into a bit of biology. While Kisunla specifically targets a form of amyloid associated with amyloid plaques, Leqembi does not. Rather, Leqembi targets an earlier version of amyloid, before it forms into plaque. Previous studies have indicated this earlier version of amyloid is toxic to neurons and thus damaging to your brain.

As this is a free country, people on Leqembi can ignore the Doctor's recommendations and "pull the plug" to stop treatments after amyloid is cleared from their brain. But then the toxic amyloid will continue to accumulate and damage your brain.

Also, it often isn't mentioned, but after stopping Kisunla, the obvious question comes up: when would one have to restart Kisunla? To phrase it another way, the basic biology in your body that caused the amyloid plaque to accumulate in your brain hasn't changed with Kisunla. Rather, Kisunla simply removed the existing amyloid plaque. It seems an open question as to when somebody who stopped treatment with Kisunla might have to restart Kisunla treatment to again get rid of amyloid plaque that has accumulated since stopping Kisunla.