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.

My mother completed her 8th infusion. Her confusion has steadily increased. After her second infuson we requested a repeat PET scan to compare her amyloid levels with baseline. Her neurologist (Pgh Pa area) was very hesitant. He stated we may be billed for a repeat PET scan. We stated we understood and still would like to see a comparison of amyloid levels. It has been over a month and no PET scan has been ordered.

@mkoda6619 Correction after her seventh infusion (not second).

@longboat1 I posted this on another thread here but, in case it's helpful, this is my/our perspective on Kisunla:

We are now in process to set up Kisunla treatments for my husband. A few reasons for Kisunla for us:
*It's once a month infusion vs. Leqembi is every 2 weeks; Kisunla is less time and inconvenience
*There is an MRI after every infusion to check for ARIA so once a month is better than twice a month
*According to what I've read, if Kisunla successfully clears away the plaques, you can stop the treatment before the 18 months. Leqembi I believe you have to do the entire 18 month treatment regardless.
*My dad died of Alzheimers 20 years ago so I've seen this road up close. If we can get a day, a week, a month or a year more of my husband being stable and "with us", my husband and family think it's worth the risks.
*I believe the ARIA risks are managed well and if anything is found, treatments are stopped immediately. Other than that, most side effects are somewhat mild from what I've read (some headache, nausea, etc.).
*If the treatments are not tolerated well, we can stop any time.
*5 years ago, there were no treatment options at all for AD/Dementia. We have two amazing options now that are only available in the early/mild stages. Once you move out of the early/mild stage, there are no options. For us, why not take the ONLY treatment option available? Otherwise, there is nothing anyone can do to prevent the decline from happening.

It's a difficult choice for each person and family. God bless everyone going through this. May you find wisdom and clarity, peace and comfort.