Any experience with taking Kinsula?

@2me so it has been a very long, exhausting process the last eight months or so. We decided to switch neurologists and go to one affiliated with a medical school and also specifically working with dementia patients. This Dr. Ordered a lumbar puncture instead of a PET scan and a 3day infusion of thiamine (b1). So he had the blood test, an mri and a lumbar puncture which all showed Alzheimer’s. He also had the thiamine infusion and stopped drinking alcohol, after which he seemed to improve and has remained relatively good for the last three months. The neurologist recommended we wait 6 months for a better baseline due to his improving with the infusion and no alcohol. That is where we are today. Confused and anxious basically since I know the leqembi and kisunla drugs have to start early to be effective. I asked the neurologist and he said six months would not make a difference - so I need to place my trust in someone.

Sorry for such a long post. It’s so hard to know what to do! Thank you for reading this!

@2me We had the PET March 17 and it was to check the amount of amaloyd in the brain -provides another piece to the puzzle. Unfortunately we have many questions for the "infusion center" in order to decide but hope to see them in the next week. My wife also has the APOE4 and the ARMS2 genes, which further complicates the situation.
All the best to you and your husband.

@elm123 You are fortunate to have access to a neurologist affiliated with a medical school! “Confused and anxious” is very understandable. No alcohol is showing a difference for you! That is very interesting. My husband has a glass of wine most nights…maybe discontinuing that would help! And there is probably no way to know if that is making the difference for you, or if the infusion of b1 is…I hope you’ll update us here…Best wishes to you and your husband!

@wkelly217 Best wishes to you also…I hope you get answers to your questions soon!

@2me My husband only drank a beer and night but stopping it really did seem to help. Luckily he likes the non-alcoholic beer. He sleeps better now and his confusion is less. He is also on Lexapro for anxiety. As you said - it is so hard to know if something is working or not. We are doing the best we can.

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...

My wife just completed her 18th monthly infusion, and her neurologist has recommended another 12. She was diagnosed with mild cognitive impairment two years ago, we’re both 68. Carol has had great results with very little side effects, and I can attest that her slide into AZ has slowed significantly. Our lives have changed very little since that first infusion, we would highly recommend Kisunla. Best of luck!

Does anyone know if Mayo approves treatment Kisunla infusions for someone with one APO 3and one APO 4 gene? I know it is not approved for people with two APO 4 genes.

My understanding is that in order to be approved for infusion treatments, you must have a single copy APOe4 gene present, which is a biomarker for Alzheimer's. I presume Mayo follows this protocal too. Best.

Although I am not necessarily new to this forum (I've been following various threads since my wife was diagnosed with early Alzheimers about a year-and-a-half ago), this is my first post as we do have experience with Kisunla treatments. She just had treatment #16 this week, with two more to go, and I most definitely have seen no further decline in her condition since starting Kisunla. Now, the big question which candidly no one can really answer definitively, is whether this is attributable to the treatments or if her Alzheimer's trajectory would have been the same without it. But while this can't be answered with certainty, let's just say that I count this as a win and IN MY BELIEF, the treatments played a role. Looking at it from another data point, her MMSE score after 5 treatments last July was 19/30 and actually improved to 22/30 in February after 12 treatments. Now, I realize this sort of variance can happen with Alzheimers patients depending on various factors, conditions, emotions, stress, etc - and Kisunla treatments do NOT boost cognition - but I believe they can slow decline enough that good days become more common and dips recover better - in other words, stabilize things. So when I see a small piece of "data" support my and others' observances that she remains stable, I call it a win. As to any side effects, my wife showed no ARIA after the various MRIs scheduled in the first few treatment phases...the only side effect she had were slight headaches for a day or so afterward (not after every treatment but I'd say after about half of them) but very mild and of no concern to her neurologist. Finally, answering the questions posed on APOE genes, hers is E3/E4.