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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?

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2me | @2me | Mar 23 7:12am
In reply to @elm123 "I'm so sorry that you and your husband had to go thru that. Sounds very scary..." + (show)
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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 also in the evaluation process…he has had the 2 blood tests (waiting on results from the 2nd) then, if it seems like a plan, he will have the MRI, then PET scan. Not sure if Kinsula or Lequembi will be the recommendation, tho I do prefer the 1x month schedule as it will be easier on him. Best wishes!

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2me | @2me | Mar 23 7:14am
In reply to @longboat1 "Anyone considering Kisunla or Leqembi should read this article. https://share.google/UYqQWJL62bgMemErS. My 82 yo significant other has..." + (show)
Profile picture for longboat1 @longboat1

Anyone considering Kisunla or Leqembi should read this article.
https://share.google/UYqQWJL62bgMemErS.
My 82 yo significant other has been seeing a neurologist since last Nov. Her blood test, cognitive assessment and MRI all indicate alz. She is on donepezil and memantine.

Yesterday she had an amyloid petscan. The next step will probably be a recommendation to begin Leqembi injections. There are some serious side effects associated with it and Kisunla. The benefit they claim is that both remove amyloid deposits in the brain. One removes one kind of deposit. The other removes another kind. There is no medical evidence that removing these deposits reduces the effects of alz. Both claim they slow it down but there is no way to measure how much. Even though most of the cost is paid by our Medicare Advantage plan, the risks of brain bleeds and other side effects are significant. I have a lot of questions for the neurologist. If I had to make a decision today, based on what I know, I would not recommend them.

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@longboat1 this is so tough to know! I tend to agree with you. Brain bleeds are a huge concern of mine as well. If it (infusion) will help, of course we want to try it, but the possible downsides are very scary, especially when factoring in the memory and cognitive issues already present. Best wishes to you…

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cnutt | @cnutt | Mar 23 9:04am
In reply to @cnutt "@elm123 well after the 10th infusion he had a reaction. Woke in middle of night with..." + (show)
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@elm123 well after the 10th infusion he had a reaction. Woke in middle of night with fever total confusion and unable to stand up or walk. Ambulance to hospital all tests normal and now the next day back to his new normal…scary tho

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@cnutt he passed Feb 3. Pancreatitis and 2 brain bleeds

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cnutt | @cnutt | Mar 23 9:05am
In reply to @cnutt "Yes my husband is on his 10th infusion. And he is still confused more each month..." + (show)
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Yes my husband is on his 10th infusion. And he is still confused more each month but who knows how he would have been without? He has had zero issues with the kisunla tho. Never a side effect. His pet scan still shows plaques but we haven’t spoken to neurologist to see if there was any difference..

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@cnutt well he passed Feb 3 . Had 2 brain bleeds and pancreatitis

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elm123 | @elm123 | Mar 23 12:51pm
In reply to @cnutt "@cnutt well he passed Feb 3 . Had 2 brain bleeds and pancreatitis" + (show)
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@cnutt well he passed Feb 3 . Had 2 brain bleeds and pancreatitis

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@cnutt I’m so sorry

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paul55 | @paul55 | Mar 24 8:16am

cnutt, I too am very sorry for your loss. My wife is set to start Kinsula infusions in the coming months. Do you know if your husband’s passing was due to his Kinsula infusions. I absolutely understand if it is too soon to discuss this.

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cnutt | @cnutt | Mar 24 8:53am
In reply to @elm123 "@cnutt I’m so sorry" + (show)
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@cnutt I’m so sorry

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@elm123 thank you. It’s tough and yet a relief

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stephanie1212 | @stephanie1212 | Mar 24 9:25am

My husband took Kisunla for six treatments. He had a bad reaction after treatment four but I did not realize the connection until he had a similar bad reaction after treatment six. Hard to get out of bed, confused, lethargic, went to ER but everything was ruled out. Discontinued the treatment after six since i realized the connection. NP recommended PET scan to determine the level of plaque. It was 74 before he began treatment. He started with lequembi but discontinued after a fall when the MRI showed some brain bleeding. The new PET scan was -12 and the plaque was all gone. However, he is still suffering badly from dysphasia and has memory problems. Perhaps the kisunla has slowed down the progression of dementia but it certainly has not stopped it!

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longboat1 | @longboat1 | Mar 24 10:06am
In reply to @2me "@longboat1 this is so tough to know! I tend to agree with you. Brain bleeds are..." + (show)
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@longboat1 this is so tough to know! I tend to agree with you. Brain bleeds are a huge concern of mine as well. If it (infusion) will help, of course we want to try it, but the possible downsides are very scary, especially when factoring in the memory and cognitive issues already present. Best wishes to you…

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@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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llthomson | @llthomson | Mar 24 11:47am

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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