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DiscussionTests indicate Alzheimer's: Any thoughts on Leqembi and Kisunla?
Caregivers: Dementia | Last Active: Jun 9 8:03pm | Replies (33)Comment receiving replies
Replies to "My husband is 84 and was diagnosed with MCI/Alzheimers late last year in October after his..."
@llthomson we are at the point of making these same decisions. My husband has not brought it up in the 10 days since we saw the neurologist…so part of me wonders if it will all be up to me, and I really don’t want to be the sole decision-maker. Trying to educate myself more about both infusions to make a more informed decision. I think your idea of exercise while you think about it is wonderful! I have no advice…just here to say thank you for your post. There is no manual for this journey. Best wishes to you both.
I'm a 75-year-old woman who just had my 4th infusion on Leqembi. That was the only option offered by my hospital system in Oregon. In fact, they only just now approved it, and I was told at the infusion center I was the first patient on it. I had researched both infusion options and decided both had pros and cons, so I was just happy to get started on one asap! I tolerate the infusions pretty well. A headache is the worst so far and after this week I didn't even have that.
Yes, MRIs are needed as you go through the 18-month process, but they become less frequent after you have several infusions with no issues.
I know that this does not cure or correct any decline thus far, but felt it was worth going through to slow down the progress from now going forward. I would have happily taken either of the infusion options!
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@llthomson I may have answered this to someone else. I'm sorry. I try to answer these messages with information of value, because I rely on other Mayo connect caregiver answers so much. thank you to all of you have taken your time for me.
My husband is 78 and was diagnosed with mild cognitive impairment. He immediately went on Lequembe what I thought was 18 months but I'm now being told is 36 months. I need to verify that now. In between are periodic MRI's and initial PetScan was done that diagnosed it along with that first MRI, and a few other test. The periodic MRI's in between certain stages of Lequembe are to look for any brain bleeding, swelling, etc. I don't know what you mean by your husband only getting a 6 month benefit from an 18 month set of infusions. What I'm told and read, is that lequembe slows down the MCI alzheimers progress, doesn't restore the memory he lost, but slows it down, and the studies I've seen, show patients are getting results. As I'm sitting in the lequembe infusion center in South Florida, spouses are communicating with each other on the results they are seeing in their significant other. But what I'm told is that takes time - and doesn't appear to be the first set of initial infusions. I don't know if this good or bad - as anytime we take any kind of medicine, medically, one thing could trigger another. What I do know is we know the outcome with no treatment of any kind. So for my husband and I we chose the lequembe route. Kinsula I've heard is a stronger treatment once a month. And the diagnosis between the two (lequembe or Kinsula) depends on the findings in the MRI, and I'm not sure if associated with that APOE4 gene. You can tell I'm not a doctor, so I have to rely on the diagnosis the doctor gave us. We didn't go for a second opinion at Mayo COnnect, as the neurologist we have here has a big practice and he was referred by our primary care. BUt I love Mayo and if you're not convinced the direction you want to go in, get your primary to refer you in, unless you are already a Mayo patient.
Hope this helps. I know as a caregiver, I'm like a sieve every time some wonderful caregiver here shares with me what they know.
God's light to help guide us through the day and all these decisions we are now forced to make. We are not alone.