Any experience with 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?

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Profile picture for georgiadawg @georgiadawg

@midnightwalker my husband just had his 13th infusion. He will have a pet scan next month. Hard to know if it has helped, but we felt like it was the best effort we could make. Anxious to know what the amyloid pet scan will show. His initial amyloid count was 31. His neurologist wants it be below 10.

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@georgiadawg I should have specified he was in Kisunla for the past 13 months.

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Profile picture for kjc48 @kjc48

@277ab My husband just had his 17th lequembe infusion, too. with the same APO4 genes and MCI diagnosis (in South FLorida) What are they telling you after you get to the 18th: do you go on Maintenance once a month?

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@kjc48 Hi . I completed my 18th infusion 2 weeks age and all went well. I see my Neuro guy in two weeks following, my Pet Scan which I get next week. I don't believe there are any protcals for Kisunala to be administered as a maintenance procedure. There have been instances for an individual to have a second round of 18 Kisunla infusions if the Pet Scan shows an excess of amaloid. I don't know, as a patient, if not having a maintenance program is a good thing or not.
I'll let you know in a couple of weeks how things go...if that is OK.

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I hope to get my Petscan soon. Will let you know. Good luck with your results...

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Profile picture for 277ab @277ab

@kjc48 Hi . I completed my 18th infusion 2 weeks age and all went well. I see my Neuro guy in two weeks following, my Pet Scan which I get next week. I don't believe there are any protcals for Kisunala to be administered as a maintenance procedure. There have been instances for an individual to have a second round of 18 Kisunla infusions if the Pet Scan shows an excess of amaloid. I don't know, as a patient, if not having a maintenance program is a good thing or not.
I'll let you know in a couple of weeks how things go...if that is OK.

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@277ab So good to hear you are doing so well, and that you completed your 18th infusion. Prayers on your Pet Scan. Appreciate you giving me an update since my husband is on infusion therapy - even though it's Lequembe! Best, Karla

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Profile picture for kjc48 @kjc48

@277ab So good to hear you are doing so well, and that you completed your 18th infusion. Prayers on your Pet Scan. Appreciate you giving me an update since my husband is on infusion therapy - even though it's Lequembe! Best, Karla

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@kjc48 Happy trails to you guys also. Joe

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Profile picture for paul55 @paul55

I’ve done a lot of reading about this as my wife just had her first Kisunla infusion. My understanding, based on what I’ve read and have been told by our neurologist, is that the Kaisen is designed to be just 18 treatments. At some point towards the end, they do a Pet scan to see if the amyloids are gone. If they are the infusions stop. Not sure what happens if they are not gone. By the way, so far the one infusion my wife had went well, with no problems. Or outward symptoms. But my understanding is that if there are problems like brain swelling or bleeding, they often are no outward symptoms.We go for a MRI next week to see if that shows any ARIA.

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@paul55 I finished me 18th infusion on June10th. Had absolutely no problems except for a bit more confusion following the infusion day 4&5. After the first and I believe the 2nd infusion I had a CAT Scan for ARIAs. Happily there were none. I am looking forward to seeing my Neuro guy on July 6th. I get a great deal of information from him.
So good luck. It seems like things are going well.

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