Any experience with taking Kisunla?

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.

@277ab
I was afraid to do kunsula
My neurologist said if there was a problem it could happen with this drug

@kjc48 Our neurologist said that there is no "maintenance" as such after 18 months in the protocol for Lequembe. However, one(with one's neurologist) might elect to reduce the infusions. Also, there seems to be some minor differences between Lequembe and Kisunla in that Kisunla protocol would stop the infusion once the brain is clear of the amyloid. So, part of the protocol is to check with PET scan (in which case insurance will pay for). Because Lequembe does not have that as part of their protocol. PET scans will probably not be covered by insurance (it is about $5000). He said that he would recommend getting a scan only if the patient is considering stopping. The patient would have to pay for it. That's my understanding now. You would want to verify that with your own doctor...

@llthomson Interesting. I appreciate your note. This whole thing amazes me and is a bit of a leap of faith especially with these drugs. My husband's PET Scan and MRI's were covered, but maybe as part of the ending protocol, that PetScan isn't covered. I'll check. I appreciate your taking the time to give me a heads up.
I love this site, and the good people in it. THank you. Best, Karla

@kjc48 The protocol for Lequembi is 18 months or 36 treatments. My spouse had a PetAmyloid scan at the one year mark, after 24 infusions. His plaques were reduced per the scan so he is now doing once a month infusions. They mentioned it is now considered a maintenance program. Our insurance covers most of the T3 MRIs and most of the Petscan. I would love to know if anyone else is doing the maintenance program and if the disease is significantly progressing doing less frequent infusions. Once a month is definitely easier for us now as we were getting weary from the 2 hour drive each way to the infusion lab. I get such great information from people here! Thanks everyone!

@moea Thank you soooooo much for sending me an update on what's happening with your husband the lequembi. I was so excited to think we got through the first 18 infusions, only to find, there are 18 more. Oh well......I appeciate the heads up at the 24 infusions, I'll take note of that....and talk to his neurologist. Hopefully, my husband will be able to go on maintenance. We live close to the infusion center. My husband is a trooper. For me, I worry about these infusions, but what's the alternative? If it helps, then we do the infusions.
Thanks, again, for the heads up. It's very helpful info,
Best, Karla

I have just took my first infusion. No side effects but I just took my first dose of 350 mg second dose will be 700 third dose will be 1050 and the fourth dose from now on out will be 1400. Too early to tell, but what from what I’ve read if you make it through the first four doses without any serious problems then you’re on your way at first dose take some allergy medicine and Tylenol a second dose would be the same except that I would get a steroid shot. She indicated more a second dose would be more intense. That’s all I can say about it right now, how’s the day this very expensive but I’ll keep you posted.

@eugenicspat456
Thanks for the update and hope you continue to feel good about continuing. We haven’t made a decision as yet.

I just finished my MRI and decided to go with Leqembi as I only weigh 105 lbs and the thought everyone getting the same dosage of Kinsula frightened me. I wanted Kinsula because you may be able to stop one the amyloid is gone and it's only once a month, but...hope I'm doing the right thing.

@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.