Leqembi: Anyone else taking this infusion to slow dementia?

Posted by badlandsgirl @badlandsgirl, Mar 11 3:56pm

Hello - My husband was diagnosed with Alzheimers Disease in June of 2023. The doctors at Mayo determined that he would be a good candidate for the Leqembi infusions. He received his 5th infusion today. We are hoping to chat with other folks receiving the infusion to share experiences.
Prayers to everyone dealing with this awful disease.

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

@badlandsgirl Welcome to Mayo Clinic Connect! I’m sure members in this discussion group will be quick to comment! Can you tell me how your husband is doing on Leqembi?
Also, how did you find Connect?

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I found Connect through the Mayo Website.
The first infusion he had every bad reaction possible, but he wanted to continue and the doctors agreed. He is doing much better with the side effects, he just gets extremely cold afterwards. Before the infusion he is given Tylenol and Claritin and that has helped control most side effects as well as slowing down the rate at which the medicine goes into his body. We don't expect to see memory improvement, just trying to slow things down as much as possible.

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@badlandsgirl

I found Connect through the Mayo Website.
The first infusion he had every bad reaction possible, but he wanted to continue and the doctors agreed. He is doing much better with the side effects, he just gets extremely cold afterwards. Before the infusion he is given Tylenol and Claritin and that has helped control most side effects as well as slowing down the rate at which the medicine goes into his body. We don't expect to see memory improvement, just trying to slow things down as much as possible.

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We have had no experience with Leqembi, but it is something our son has mentioned for his dad, and he wishes we would look into it…so best wishes to you and I hope the side effects lessen going forward. “Meeting” others on Connect is such a great comfort!

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My husband was diagnosed with Alzheimer's after a spinal tap last fall found amyloids in his brain fluid. So he was eligible for Leqembi and began infusions in December. However, after just six infusions over three months, he decided he didn't want to continue. To him, the risks involved seemed to outweigh the very, very slight benefit (perhaps a 5-month slowing of the disease over a couple years). Plus, an MRI is required after every few infusions to make sure there isn't any brain bleeding. Finally, to anyone considering Leqembi, make sure about your insurance coverage first, as it's very expensive. We were lucky because Medicare and our supplemental Blue Cross/Blue Shield covered everything.

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Thank you for sharing, there are a lot of considerations involved.

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@badlandsgirl I just received a copy of the AARP magazine. Its cover story was on Alzheimer’s but I was unable to link it in. Some discussion about LEQEMBI. One researcher commented, “this is the beginning of the ability to treat, and change the course of, Alzheimer’s disease”. I’ll work on it some more today.
Can you think of a place, in your neighborhood, where you might find the magazine?

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@becsbuddy

@badlandsgirl I just received a copy of the AARP magazine. Its cover story was on Alzheimer’s but I was unable to link it in. Some discussion about LEQEMBI. One researcher commented, “this is the beginning of the ability to treat, and change the course of, Alzheimer’s disease”. I’ll work on it some more today.
Can you think of a place, in your neighborhood, where you might find the magazine?

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Thank you for thinking of us! My wonderful boss gave the article to me. Her dad is a subscriber and told her" you better give this to that girl of yours!" I have angels watching out for me and it is a very good article.

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@becsbuddy

@badlandsgirl I just received a copy of the AARP magazine. Its cover story was on Alzheimer’s but I was unable to link it in. Some discussion about LEQEMBI. One researcher commented, “this is the beginning of the ability to treat, and change the course of, Alzheimer’s disease”. I’ll work on it some more today.
Can you think of a place, in your neighborhood, where you might find the magazine?

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I just received the magazine, and haven’t read it yet. I hope @badlandsgirl can find a copy, as it looks promising. I will read it later, when things are quiet and I can take notes.

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My husband (59) started today. Everything went fine and then about 4 hours after completion he started shivering and his heart started thumping. We are at ER now.

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@badlandsgirl

I found Connect through the Mayo Website.
The first infusion he had every bad reaction possible, but he wanted to continue and the doctors agreed. He is doing much better with the side effects, he just gets extremely cold afterwards. Before the infusion he is given Tylenol and Claritin and that has helped control most side effects as well as slowing down the rate at which the medicine goes into his body. We don't expect to see memory improvement, just trying to slow things down as much as possible.

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Hiw has the cold been. My husband couldn't walk he was shivering so bad.

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