Any patients have experience with taking Kisunla?
@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.
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@georgiadawg I should have specified he was in Kisunla for the past 13 months.
@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
@kjc48 Happy trails to you guys also. Joe
@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.
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2 Reactions@277ab I wanted to check if you are better after taking Kinsula?
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1 Reaction@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
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5 Reactions@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.
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3 Reactions@277ab
Thanks like to hear
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1 ReactionMy 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.