Any caregivers have experience with their loved one taking Kisunla?

@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?

I did it an AI search and it does say that Mayo will give infusion treatments for people with to APO 4 genes. But it also confirmed that MHealth Fairview in the Twin Cities will not due to higher risk.

Best of luck. Prayers sent your way and ours and to all caregiver's and their loved ones in taking this journey. Thanks for responding. Best, Karla

@kjc48 To date, I have no idea what post Kisunla protocol will look like. I hope clarification will come out soon.

@277ab I'm confused as well. I thought my husband had 18 lequembe infusions, now I'm finding out it's 18 months of lequembe which means 36 infusions. He just had his 17th done. I'm going to call the Guide program, as part of his treatment with his neurologist who may be able to get me straight. I thought it was every two weeks up to the 18th infusion, then mainenance.... Thanks for keeping me posted. I will do the same. Best, Karla

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.

@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