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Any experience with taking Kisunla?
My husband has been diagnosed (MRI, blood work etc.) with early alzheimers and his neurologist is recommending Kinsula. Does anyone have experience caring for someone who is taking this drug?
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@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.
@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.
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2 Reactions@paul55
I have to let you know that I was found to have two APO4 genes and a diagnosis of mild cognitive impairment. I live in NE FL ( MAYO land south) and have just had my 17th infusion...and all is extremely well. So I don't believe that MAYO has those restrictions.
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3 ReactionsGood to know. Hope things continue to go well.
@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?
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2 ReactionsI did it an AI search and it does say that Mayo will give infusion treatments for people with to APO 4 genes. But it also confirmed that MHealth Fairview in the Twin Cities will not due to higher risk.
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1 Reaction@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.
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2 ReactionsBest of luck. Prayers sent your way and ours and to all caregiver's and their loved ones in taking this journey. Thanks for responding. Best, Karla
@kjc48 To date, I have no idea what post Kisunla protocol will look like. I hope clarification will come out soon.
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1 Reaction@277ab I'm confused as well. I thought my husband had 18 lequembe infusions, now I'm finding out it's 18 months of lequembe which means 36 infusions. He just had his 17th done. I'm going to call the Guide program, as part of his treatment with his neurologist who may be able to get me straight. I thought it was every two weeks up to the 18th infusion, then mainenance.... Thanks for keeping me posted. I will do the same. Best, Karla