Experience with Donanemab and Lecanemab

Posted by spoolly @spoolly, Aug 11, 2025

My wife has been diagnosed with Alzheimer’s and her Mayo neurologist recommended treatment with either Donanemab or Lecanemab. Does anyone have any experience with either of these drugs? It seems like we have a million questions.
How do you choose between the two?
The infusion time with either one is relatively short, but sounds like your actual time is much longer. Are you generally able to get by with one day of medical each cycle?
How bad are the side effects? Are you potentially losing 18 months of relatively good time during the disease progression while you go through treatment?
There are numerous articles which question whether the benefits from the clinical trial will actually follow in actual practice. What kind of actual experience have people experienced?
I am not sure why our family and myself seem to be questioning this treatment. My wife is a three time ovarian cancer survivor. She has obviously been through quite a great deal from a medical standpoint. The medical community and specifically Mayo has saved her. If one of these treatments will help there is no question we will proceed. I am sure part of our hesitation is in our situation the treatment cannot be done at Mayo.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

I hope the med helps your wife. I don’t have any info on either of them, but wanted to say that my father who had Alzheimer’s took two of the traditional meds for it. They were a great help as we tried reducing them once with negative results. Best wishes with everything.

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My wife has now had 12 doses of Lequimbi and the infusion process is not bad at all. Her first time was a little rough with headaches but we now take a tylenol prior to the infusion and have lengthened the process to 1.5 hours. Her Neurologist just had his first patient finish the 1.5 year long process and is very encouraged with the results. We take the infusion at a local clinic with no issues so not doing it at the Mayo shouldn't be an issue. I wish you every success.

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My husband takes Leqembi and has not had any side effects from it. The problem that I have is the neurologist always asks if I see an improvement. I can’t really answer that because I don’t know how he would be now if he hadn’t taken the infusion. He has had treatments since January of 2025 every other week. He is more forgetful but he could be worse if he hadn’t taken the not taken the drug. This journey is very hard and I have to constantly check my patience.

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My mom was offered the treatment but my dad declined because of possible brain bleeds. I see his point.

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Profile picture for laura1970 @laura1970

My mom was offered the treatment but my dad declined because of possible brain bleeds. I see his point.

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Thanks for your input. Treatment or not is clearly not an easy decision.

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Just finished infusion #17. After #16 I had the same blood test that diagnosed AZ. Results show a substantial drop in both categories. Little or no complications. Male, 74

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Profile picture for jgestey @jgestey

Just finished infusion #17. After #16 I had the same blood test that diagnosed AZ. Results show a substantial drop in both categories. Little or no complications. Male, 74

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@jgestey, how often do you get infusions? How are you doing?

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Profile picture for jgestey @jgestey

Just finished infusion #17. After #16 I had the same blood test that diagnosed AZ. Results show a substantial drop in both categories. Little or no complications. Male, 74

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@jgestey

Thanks for your comment. I just had my first infusion n two days ago so very new to the "journey"

I'm curious about the blood test you took that indicated improvement. What are the two categories? Maureen

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My husband has had 4 monthly infusions of Kisunla so far and has no after effects whatsoever. He does have a reaction initially (gets very hot, flushed when infusion is started, but they stop it, add something like Benadryl or Pepcid to the infusion and restart it in a few minutes and he's fine! We have spoken with a woman who just completed 18 months of it and she feels it has made a huge difference. Don't delay making the decision because it's my understanding that it's only indicated in the early stages of Alzheimer's and after a certain point they won't give it to you.

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Profile picture for theglobalnomad1 @theglobalnomad1

My husband has had 4 monthly infusions of Kisunla so far and has no after effects whatsoever. He does have a reaction initially (gets very hot, flushed when infusion is started, but they stop it, add something like Benadryl or Pepcid to the infusion and restart it in a few minutes and he's fine! We have spoken with a woman who just completed 18 months of it and she feels it has made a huge difference. Don't delay making the decision because it's my understanding that it's only indicated in the early stages of Alzheimer's and after a certain point they won't give it to you.

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@theglobalnomad1, I wish there was more information to the public about the new treatment options for Alz. After caregiving 2 family members with dementia…I would highly encourage considering it. Despite potential side effects…..dementia is so brutal….

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