Any patients have experience with taking Kisunla?

Posted by 277ab @277ab, May 8 10:00am

@paul55
Paul, I did not mention this in my initial text but I indeed have two APO4 genes and I understood that I was the perfect candidate for Kisunla protocol.

Interested in more discussions like this? Go to the Living with Cognitive Impairment Support Group.

Profile picture for georgiadawg @georgiadawg

@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.

Jump to this post

@georgiadawg I should have specified he was in Kisunla for the past 13 months.

REPLY

@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.

REPLY
Profile picture for 277ab @277ab

@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.

Jump to this post

@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

REPLY
Profile picture for kjc48 @kjc48

@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

Jump to this post

@kjc48 Happy trails to you guys also. Joe

REPLY

@paul55 I finished me 18th infusion on June10th. Had absolutely no problems except for a bit more confusion following the infusion day 4&5. After the first and I believe the 2nd infusion I had a CAT Scan for ARIAs. Happily there were none. I am looking forward to seeing my Neuro guy on July 6th. I get a great deal of information from him.
So good luck. It seems like things are going well.

REPLY
Profile picture for 277ab @277ab

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...

Jump to this post

@277ab I wanted to check if you are better after taking Kinsula?

REPLY
Profile picture for lkazamias @lkazamias

@277ab I wanted to check if you are better after taking Kinsula?

Jump to this post

@lkazamias Thanks for asking. Feeling fairly well for an 80 year old guy. My biggest issue is speech. Word finding is a bear. Will start speech therapy next week to see if there are some strategies that can improve my speech especially in the evening. This piece is hard for me. I was a professor for 40 years and I made my living lecturing. Joe

REPLY
Profile picture for 277ab @277ab

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...

Jump to this post

@277ab your adventure sounds pretty much like my experiance, including your yoga practices!! Congratulations!
Please keep an eye out for a once a year maintenance dose for Kisunla in early 2027. I just read about this in an Eli Lilly announcement. Could be very happy news. Stay well and active.

REPLY
Profile picture for 277ab @277ab

@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.

Jump to this post

@277ab
Thanks like to hear

REPLY

My neurologist is recommending infusions to remove amyloid plaque. He’s suggesting Kinsula. Has anyone done this before? When? How long did treatment last? Side effects? I need to make a decision soon about taking my chances without infusion or with it.

REPLY
Please sign in or register to post a reply.