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.

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277ab | @277ab | May 3 7:52am

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...

paul55 | @paul55 | May 8 10:36am

@277ab MHealth Fairview in that Minnesota will not give infusion treatment to someone with two APO four jeans. They say the risk for brain swell or bleeding, or more catastrophic outcomes, are too high. That is what I see in Google searches on this subject also. But I have no knowledge about this myself.

277ab | @277ab | May 16 8:39am

In reply to @277ab "I am approaching my 18th, and last, Kisunla infusion and was looking on line for reports..." + (show)

@kjc48 hi, we are not sure if I will go to maintenance mode or something else. My final infusion is mid June and two weeks after that I get a cat scan and then I see the Neurologist. I guess the future depends on the test results. I will post the follow up Kisunla plan.

joycel10 | @joycel10 | May 21 9:57am

In reply to @277ab "@kjc48 hi, we are not sure if I will go to maintenance mode or something else...." + (show)

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

eugenicspat456 | @eugenicspat456 | Jun 21 10:57am

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.

wkelly217 | @wkelly217 | Jun 21 11:36am

In reply to @eugenicspat456 "I have just took my first infusion. No side effects but I just took my first..." + (show)

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

midnightwalker | @midnightwalker | Jun 23 10:06pm

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.

georgiadawg | @georgiadawg | Jun 24 8:45am

In reply to @midnightwalker "I just finished my MRI and decided to go with Leqembi as I only weigh 105..." + (show)

@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.

georgiadawg | @georgiadawg | Jun 24 9:07am

In reply to @georgiadawg "@midnightwalker my husband just had his 13th infusion. He will have a pet scan next month...." + (show)

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

277ab | @277ab | Jun 24 9:55am

@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.

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