After Leqembi
Comments
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Following. We're trying to decide which infusion/subcutaneous to do.
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You can search this forum for
Leqembi and read other posts. The search thingy is at the top of the page. There are some posts from people with dementia who are getting the infusions. Some comments are that it "lifted the fog" other comments are that if it slows progression, there is really no way to tell and at most it slows it by months. There are side effects that need to be considered.
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My DH finished the initial regimen of biweekly infusions and is now on a maintenance program with Leqembi. He receives an infusion every 4 weeks. A PET scan showed the amyloid plaque is totally gone from his brain but the progression continues. I assume it is slower than it would be otherwise.
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My DW just started Kisunla IV therapy. They ramp up dosage during the first four monthly infusions and my biggest concern is if her brain MRI's between infusions show any signs of AIRA's (brain bleeds), her doc may have to put a hold or stop the therapy altogether. My DW thinks it's a cure (I don't correct her) and I think it would devastate her if it was no longer an option. I'll try to keep folks here updated on her progress if there is interest. I believe Kisunla and Leqembi both only delay the progression of Alzheimer's but I also like to believe that might buy time to benefit from other future medical developments.
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There is interest here. My DW was too late to benefit from any infusion treatments but it's nice to hear there may be hope for others in the future. Ya never know what medical break through is around the corner.
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Thank you both for these updates. Interesting for many I am sure.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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