Leqembi: Anyone else taking this infusion to slow dementia?

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.......

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.

@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.

@dlynng Please NEVER apologize for a long post. I'm hanging onto your every word and I so appreciate everything you wrote. It gives me a perspective of what's to come, this surprising up and down journey. The snowplow reference puts it in perspective, if lequembe helps clean out that plaque, then lequembe it is. I'm in the throws of trying to decide what to do and where to move. During his diagnosis, we had to move out of our house, due to mold, that same week, so due to the extent of the damage, we're remodeling, and in the middle of all of this, it's now left me with what to do and where to go. I'm in a rental right now, just trying to calm down after a horrid year last year. One of his sons live in S. Carolina; mine in Texas, we're a second marriage, so I'm evaluating just what we should do. We're in Florida not near any of the adult kids. As I move through this, I just trying to transition into decisions and change. My husband is kind too and very thoughtful. I read your note to my husband to share your husband's lequembe success. Thank you for reaching out. What a perk to get this message today. I have been so worried about lequembe. Does your husband take Cerefolin, that brain supplement? Mine is on that as well.

@kjc48
No, my husband doesn't take Cerefolin; I wasn't aware of it, but will ask our neurologist at an upcoming visit. Thank you!

@dlynng The neurologist, here, Dr. Gelblum in south florida, put him on Cerefolin, at the same time he started lequembe. I get it from Tampa, but, you can also get it on Amazon now. My husband takes one tablet a day. Thank you for thanking me.

@kjc48 It's a prescription supplement?

@trishaanderson His neurologist wrote a script back in August but I don't think you have to have a prescription any longer, as BDF (Brand Direct Health) in Tampa Florida sells it through Amazon now, their direct BDF facility and one other place. It's called Cerefolin Brain Wellness, a white tablet once a day. If you get it through BDF (Tampa) at 5455 W. Waters Avenue, ask them if there is a $30.00 coupon available when you order it. I have filled it twice now, it comes with a 90 day shipment. And they ship it to your address. Their number: 1 866 331-5440 and internet address: http://www.BrandDirectHealth.com

@kjc48 Thank you so much for your detailed response.