Any caregivers have experience with their loved one taking Kisunla?

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: Mild Cognitive Impairment (MCI) & Dementia Support Group.

japlok | @japlok | Mar 26 4:51pm

In reply to @llthomson "Has anyone heard of Trontinemab? "Trontinemab (RO7126209) is an investigational Alzheimer’s drug being developed by Roche,..." + (show)

@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.

wkelly217 | @wkelly217 | Mar 31 10:13am

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

watajem | @jillemckeon | Apr 1 8:22am

In reply to @wkelly217 "I am considering to have my wife start Kisunla - any advice?" + (show)

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.

wkelly217 | @wkelly217 | Apr 1 9:53am

In reply to @jillemckeon "There have been a number of posts about this previously. For others in this chat, I..." + (show)

@jillemckeon Thank you

Colleen Young, Connect Director | @colleenyoung | Apr 13 3:19pm

In reply to @wkelly217 "I am considering to have my wife start Kisunla - any advice?" + (show)

@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?

paul55 | @paul55 | Apr 14 4:38am

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

2me | @2me | Apr 14 6:43am

In reply to @elm123 "I'm so sorry that you and your husband had to go thru that. Sounds very scary..." + (show)

@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!

2me | @2me | Apr 14 6:49am

In reply to @longboat1 "@2me to complete our story about infusions, my LO had her appt with one of the..." + (show)

@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.

2me | @2me | Apr 14 6:52am

In reply to @llthomson "Has anyone heard of Trontinemab? "Trontinemab (RO7126209) is an investigational Alzheimer’s drug being developed by Roche,..." + (show)

@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.

elm123 | @elm123 | Apr 14 7:31am

In reply to @2me "@elm123 We are at this same crossroads. My husband has had the initial blood tests, and..." + (show)

@2me so it has been a very long, exhausting process the last eight months or so. We decided to switch neurologists and go to one affiliated with a medical school and also specifically working with dementia patients. This Dr. Ordered a lumbar puncture instead of a PET scan and a 3day infusion of thiamine (b1). So he had the blood test, an mri and a lumbar puncture which all showed Alzheimer’s. He also had the thiamine infusion and stopped drinking alcohol, after which he seemed to improve and has remained relatively good for the last three months. The neurologist recommended we wait 6 months for a better baseline due to his improving with the infusion and no alcohol. That is where we are today. Confused and anxious basically since I know the leqembi and kisunla drugs have to start early to be effective. I asked the neurologist and he said six months would not make a difference - so I need to place my trust in someone.

Sorry for such a long post. It’s so hard to know what to do! Thank you for reading this!