Any experience with taking Kinsula?

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..

Thank you. I am worried about the side effects. I’m sorry it hasn’t seemed to help your husband. I hope it still might. That’s all we seem to have is hope.

@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

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.

@elm123 well it turned out he has positive blood cultures for E. coli and some other one. He’s in hospital to receive iv antibiotics. So unknown if related to infusion? He is much better already tho. And I’m still happy tried the infusion. Visit with neuro Oct 9. Will see where we go from here

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.

@longboat1 Thank you for your input. The web site you referenced is very interesting. I also have misgivings about the Kisunla treatment. How to decide if we should try it or not? I am waiting to see what the PET scan says and then I will try to explain to my husband the risks and possible benefits. He does have on APOE4, so that makes it even harder.