Any experience with taking Kinsula?

Posted by elm123 @elm123, Sep 30, 2025

My husband has been diagnosed (MRI, blood work etc.) with early alzheimers and his neurologist is recommending Kinsula. Does anyone have experience caring for someone who is taking this drug?

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Profile picture for llthomson @llthomson

Has anyone heard of Trontinemab? "Trontinemab (RO7126209) is an investigational Alzheimer’s drug being developed by Roche, utilizing a brain shuttle technology for enhanced amyloid-beta clearance." Apparently, it is a next-generation drugs. (At the ALS forum in Toronto July 2025):
-At 3.6 mg/kg, 91 percent of participants were amyloid-negative after six months.
-Trontinemab cleared plaque even in deep brain regions that other antibodies hardly reach.
-In blinded safety data, the ARIA-E rate was 1 percent.
-Roche will take this dose into Phase 3 trials to start this fall.

This sounds very promising. Unfortunately, the clinical trials are all conducted in Europe and would be difficult for us in US to participate...

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@llthomson I have heard of the drug, and it certainly does sound promising. And there are trials going on in the US. Here are two I found. http://www.clinicaltrials.gov, NCT07170150 and NCT07169578. Both are recruiting. It isn't listed as a Brainshuttle, but it is with Trontinemab.

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I am considering to have my wife start Kisunla - any advice?

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Profile picture for wkelly217 @wkelly217

I am considering to have my wife start Kisunla - any advice?

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There have been a number of posts about this previously. For others in this chat, I think you can search the comments for a subject matter, right?

I'm sure you will find previous posts very helpful.

Best to you.

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Profile picture for jillemckeon @jillemckeon

There have been a number of posts about this previously. For others in this chat, I think you can search the comments for a subject matter, right?

I'm sure you will find previous posts very helpful.

Best to you.

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@jillemckeon Thank you

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Profile picture for wkelly217 @wkelly217

I am considering to have my wife start Kisunla - any advice?

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@wkelly217, welcome.
@jillemckeon is right. Others have shared their thoughts and experiences about Kisunla (donanemab-azbt). I moved your question to this related discussion:
- Any experience with taking Kinsula?https://connect.mayoclinic.org/discussion/any-experience-with-taking-kinsula/

Has your wife started Kisunla? How are you both doing?

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Still waiting and waiting for a discussion for answers to a number of questions.

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My wife starts Kisunla infusions in mid-May. Hoping for good results and no complications.

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Profile picture for elm123 @elm123

I'm so sorry that you and your husband had to go thru that. Sounds very scary for both of you. My husband is early in his Alzheimer's diagnosis, so I have been hoping this will help. He still has to have the PET scan before even making an appointment for his first infusion. He wants to try it. I hope the medicine doesn't make it worse. It's so hard to know what to do, since, as you said, the confusion and memory issues are already there. I am sending nothing but good thoughts to you and your husband.

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@elm123 We are at this same crossroads. My husband has had the initial blood tests, and will be scheduled soon for the MRI. PET scan is booked for early June. Will the these blood tests/MRI/PET scan give a diagnosis, or can that only come from a doctor? I’m worried the diagnosis will depress him further (and he’s already down in the dumps, pretty much every day). Just want to know what to expect (as much as possible so I can prepare myself and help him.). Best to you and your husband! Thank you for writing!

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Profile picture for longboat1 @longboat1

@2me to complete our story about infusions, my LO had her appt with one of the facilities near us in January. They evaluated her and interviewed me about her current condition. On the 8 stage scale she was rated "4" and too far along for infusion therapy. The neurologist scolded me when I told her that we started daily 10 mg lithium orotate in Aug 2024. It's all we have!

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@longboat1 -I am sorry your LO did not qualify…there is so much uncertainty in all of this: the disease, the new meds, what is best for one’s own circumstances, and I’m not sure medical professionals are all on the same page, either. Best wishes.

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Profile picture for llthomson @llthomson

Has anyone heard of Trontinemab? "Trontinemab (RO7126209) is an investigational Alzheimer’s drug being developed by Roche, utilizing a brain shuttle technology for enhanced amyloid-beta clearance." Apparently, it is a next-generation drugs. (At the ALS forum in Toronto July 2025):
-At 3.6 mg/kg, 91 percent of participants were amyloid-negative after six months.
-Trontinemab cleared plaque even in deep brain regions that other antibodies hardly reach.
-In blinded safety data, the ARIA-E rate was 1 percent.
-Roche will take this dose into Phase 3 trials to start this fall.

This sounds very promising. Unfortunately, the clinical trials are all conducted in Europe and would be difficult for us in US to participate...

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@llthomson I wonder if/when it is approved for use in the US, if one would be allowed to stop whatever treatment they are on (Kisunla, Lequembi) and switch to Trontinemab? Doubtful, most likely….but it sounds like this newer drug could potentially be much more effective. Thank you.

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