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Leqembi: Anyone else taking this infusion to slow dementia?
Caregivers: Dementia | Last Active: Mar 21 11:29am | Replies (126)Comment receiving replies
I may have answered this, but I'll do it again, since this whole thread is about lequembe. My husband was diagnosed with MCI in August, 2025. He went lequembe right away. To date, he's had four MRI's, is going into his 11th infusion next week. No brain bleeding or swelling. He was a little tired at first, but he's tolerated the infusions well. I believe when he gets to the 15th infusion, he has another MRI, then he goes to 18 infusions, MRI and Pet Scans to see the hopeful progress, then on maintenance in June, 2026. We adopted a bit of a better whole foods approach, I'm trying to get him to eat a bit more fruit and a vegetable every night. I read ice cream/sugar wasn't good for MCI, so we don't do as much of that like he used to. He's still forgetful, has trouble solutioning things, but he's still independent, still driving, etc. I've been trying to take over the bills, and that's been a bit of a hurdle, since I'm worried he may click on the wrong thing on his computer, like what happened last year, when we were hacked into. What a mess trying to straighten that out for months.......
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@kjc48
Thanks for sharing your journey! It's so good that our husband is doing well on Leqembi. From a diet perspective, we have moved to more of a plant-based approach. Fish maybe once a week, and chicken occasionally. Less dairy overall, but still some cheese at times, and sometimes milk/half & half in a soup. My own primary care physician is very knowledgeable about plant-based eating, and the transition has been smooth overall. As background, my husband was diagnosed with MCI in late 2022, and the doctors first did some tests to rule out non-dementia causes. Leqembi wasn't approved by FDA and insurers until early 2023, and then he had to go through a spinal tap to confirm the presence of amyloid plaque in his brain in order to be approved for Leqembi, and of course, the insurance approval process. His disease has progressed in some ways, but I would say more slowly than the initial prognosis info we had received. So for me, that says that Leqembi has been helpful. After he completed the initial 18-month infusion series, he had another spinal tap to see the results in the amyloid plaque. (By the way, he had spinal taps because at first, insurers were not approving the PET scan option, so I'm glad you've had that possibility.) It was great news for us to learn that the amyloid plaque was indeed minimized, but the hard reality is that memory and other functions are not actually restored from that. That said, we're very thankful that the maintenance infusions are going smoothly as well. One of the nurses explained it to me with an analogy: think of Leqembi as a "snowplow" for the amyloid plaque. We can't prevent the snow from falling (today medicine can't prevent amyloid plaque from forming in the brain), but shoveling/plowing regularly keeps the snow from accumulating on the driveway/sidewalk (and that's what leqembi does in the brain, by continuing to clean out the amyloid plaque). In the midst of this all, I retired and we moved back to our home city/state to be closer to our daughter & son-in-law, so there have been other changes for him to adjust to. He needs more help with some things ... over time, I have taken over the finances and we did get rid of our second car, because navigation became hard for him after we moved. Expressive language is harder for him now, especially when it comes to pulling up the right noun for something, but his kind personality and sense of humor still shine through! Sorry for the lengthy post ... I hope it's helpful in some way. I've been so grateful for people who have shared their journey on this path we never expected.