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

GEH

I am looking into the two different infusions available for Alzheimer's where I live. I have like a thousand questions but here are a few....

Which "brand" is most effective?

Which has least side effects?

Are the infusions painful?

If they do cause side effects... How long do they typically last? Can you "gut it out" or are they overwhelming?

Do you actually feel the effects of them working?

Any input is appreciated.

Thanks

lfaust58

GEH—

I'm coming up on my 13th infusion of Lequmbl. It seems to be effective in sloeinslowing the progression of AD. No, infusions are not painful- no more than giving blood- little jab at first. Only real bad side effects I've had was after thw first one- like a "getting used to it" thing. Body aches,, tiredness, difficulty getting out of bed. "Feeling it working"? Not really

LBC83

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:

	Leqembi	Kisunla
Infusion Frequency	Every 2 weeks for 18 months	Every 4 weeks
Infusion Duration	18 months for initial dosing, then switch to monthly infusions after initial treatement. Note that FDA-approval of subcutaneous version of Leqembi for maintenance dosing is pending on 8/31 (i.e. one week from today).	Until Amyloid cleared as determined by PET scans. In the phase 3 trial, 17% stopped taking Kisunla at 6 months, 47% at 12 months, and 69% at 18 months.
Effectivity, in terms of % slowing in cognition per the Clinical Dementia Rating - Sum of Boxes (CDR-SB) cognitive test	27%	29%
ARIA Rates	Lower	Higher

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).

https://www.youtube.com/watch?v=UBscBhd-wh8

GEH

https://alzconnected.org/discussion/comment/251493#Comment_251493

https://alzconnected.org/discussion/comment/251493#Comment_251493

https://alzconnected.org/discussion/comment/251493#Comment_251493

https://alzconnected.org/discussion/comment/251493#Comment_251493

Hi lfaust58…Thank you so much for the feedback. 😊

GEH

https://alzconnected.org/discussion/comment/251496#Comment_251496

LBC83.... Lots of info. Thank you. I have not watched the video yet but will in morning. I was already leaning towards the Leqembi but the information you provided solidified my choice. The Aria part is of concern to me. MRI of my brain before any meds already showed evidence of three brain bleeds. I have had two really sucky (yes that is a medical term lol) neurologist that really did not explain what that meant except that I could not take any of the "slow the process down" meds vs "help with symptoms meds". I am now unpatiently waiting (lol) till Sept 10th appointment with a Barrow's Neurological neurologist so I can discuss with him my options with the pre-existing things I have. Looking forward to getting some options offered and explained. Again thanks for the detailed information provided. Very informative and helpful. GEH :)

jfkoc

There is a lot of information for you to read online in addition to talking to fellow posters.

From the Barrows site:

• Lecanemab (Leqembi): Approved by the FDA in early 2023, lecanemab targets and binds to beta-amyloid proteins and prevents them from clustering to form the plaques contributing to disease progression. To date, lecanemab is most beneficial for those with early signs of Alzheimer’s-related cognitive decline. However, more research and long-term studies are crucial to fully understanding the drug’s benefits and risks.
• Donanemab (Kisunla): Donanemab also targets amyloid plaques but focuses on a specific type of amyloid called modified pyroglutamate amyloid. This type of amyloid is found mainly in the plaques themselves. Because Donanemab targets established plaques, it may work best in the early stages of Alzheimer’s. The treatment is given through an IV infusion once a month. The FDA approved it for Alzheimer’s patients in 2024.

GEH

Thank you so much!! Really appreciate the info. I have a Barrows Neurologist appointment coming up I think in like too weeks. I am a little bit armed with information so I hopefully will be able to discuss my situation and how best to move forward. Thanks again. GEH

GEH

Sorry "jfkoc".. I have a question for you. Have you had any personal experience with either one of these drugs? If yes, would you please be willing to sharing some with me?

jfkoc

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

GEH

Thanks Judith. Appreciate it

JJ401

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.