Any experience with taking Kisunla?

@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.

@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?

@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.

@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

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.

I am approaching my 18th, and last, Kisunla infusion and was looking on line for reports of other patients who have completed the entire protocol. Here my take om my experience. I started this journey 16 months age after searching for several weeks for a way to get the Kisunla infusions. I did find one and I am very happy with the infusion center, the Neurologist, and the protocol. I had to get a Pet-scan to see where my ALZ was and to use as a plaque baseline. As many folks mentioned I also had to have 2or3 MRIs to be sure I wasn't a candidate for bleeds. I wasn't. Following each infusion, for a period of about 2 weeks, my memory and general was a bit worse but those experiences disappeared after 2 weeks. Possibly a bit of inflammation...no one was concerned.
My infusions lasted 1 hour for the first two (for observation) and only 30 minutes after that.
I must say that I have no complaints of increased memory loss ( actually with memory exercise I think it is a bit better). My worst time is when I am fatigued in the evening. My wife agrees with my descriptions of my current behavior. My daily routine has not changed at all. I am 80years old and continue to drive (locally), and I have continued to go to Yoga 3 days a week, Pilates 3 days a week, and run 3 days a week. It is nice to have a routine.
I am wondering what the game plan is following the 18 Kisunla infusions? Thank you for listening...