We are just waiting for the paperwork to be processed, then DH will start treatment. He’s not worried, but I will be on pins and needles, at least til we’re past several treatments.

I'm trying to get my husband signed up. Hope we can get him going soon.

Yesterday was his 4th infusion and then a meeting with the Neurologist. It does not appear that he is any worse from beginning the infusions, which could mean that it is working along with the Rx he is currently taking. He is not better, per se, but not worse. The Doctor did not recommend any changes to medication. This morning he had the first MRI after beginning treatment. If we don't hear anything in a couple of days, then we can assume that he does not have brain bleed or any other irregularities. He is still not suffering from any visible side effects other than being more tired than usual on infusion day. He is still primarily independent (stays at home during day while I am at work) but still needs my help (reminders, nudges, prompts, etc) with things that are not routine for him.

I was on pins and needles before my DH's first infusion. He has now had two infusions and so far so good. I hope you will find the process to be pretty smooth.

Thanks for that encouraging response. I’m hoping more and more people will choose to try Lequembi. I’m going to try to advocate locally about the infusions.

Elizabeth607, thank you for sharing your experiences. It is interesting to note your DH seems more fatigued on infusion day. My DH seems energized following infusions, but he’s only had two. Perhaps he is just excited to have the process in place.

LOL, PJ52, I know what you mean. My DH definitely has more energy than I most of the time. I think I spend more time and energy wondering about the future than he does. But I’m grateful he seems to be just living each day as it comes.

I’m sorry your husband has some micro bleeds. My DH had his 5th infusion last week. Again he felt fine and had no reactions. Just the week before he had an MRI. We met with his neurologist today who said the MRI showed some brain swelling. Since my DH is his first patient getting Lequembi the doc is going to study protocols to see how we proceed. He is scheduled for two more infusions and we will see the doc in July to see whether we continue infusions. I am seeing some increasing cognitive issues.

My husband had his first infusion this week. He was tired the following day, and has had a headache for two days (so far). He did not have the tylonol, steroid, benedryl premeds, as the infusion nurse practicioner said it was optional. He'll try them next time.

One side affect of my first infusion of Leqembi was a raised temperature (100) and 1 small episode of vomiting. Other than that all went well. I will see how it goes on the 2nd dose this Friday.

Sandi Barkan

My wife has had two infusions. No issues so far. MRI next week.

I believe I have seen a lack of progression in the disease. She has said she feels better. I hope she is not "just hoping" and it is true. The family says she might be a little more cognitive.

Has anyone seen a more "clingy" situation with the onset of Alz.? She seems to be more afraid to be away from me. I pray for all of the sufferers of this horrible disease. And I pray for each and every Caregiver that God gives each of us the strength and compassion to help our loved ones.

hdbf noted Leqembi was "only tested up until the #36 infusion and they have no evidence of proof after this point."
Sorry for the math, but let us convert to months:
36 biweekly infusions is 72 weeks x 12 months / 52 weeks = 16.6 months. Thus, you have been on Leqembi for almost 17 months.

The Leqembi Phase 3 trial (on which FDA approval for Leqembi was granted) had a duration of 18 months. But after the 18 month trial, Eisai (manufacturer of Leqembi) continued the trial with what is referred to as an "open-label extension (OLE)." The name is derived from the fact that those on placebo in the first 18 months were permitted to switch to receiving Leqembi, and those receiving Leqembi continued to receive Leqembi. Eisai refers to the Leqembi Phase 3 trial as "Clarity AD". Below is a chart from a July 30, 2024 presentation by Eisai at the Alzheimer's Association International Conference in Philadelphia.

The title of the chart is "Clarity AD OLE: CDR-SB Efficacy Through 36 Months". At the bottom of the chart, they show the number of participants in the 3 categories shown on the chart. The row labeled "N (Early start)" is referring to the people who have been on Leqembi continuously since the trial started (i.e. 36 months or 3 years). Side note: I presume the testing is continuing, and the data shown is as of sometime shortly before the presentation in July 2024. The chart shows there were 569 people in the Early Start group after 36 months, while this group started with 859 participants. I'm no expert in clinical trials, I presume some people drop out because they relocate, or maybe some die of natural causes unrelated to the trial, or other reasons. Again, the bottom line is that Eisai has data on how well Leqembi works for 569 people taking Leqembi continuously every 2 weeks for 3 years, as of July 2024.

The chart is showing the change in score on the Clinical Dementia Rating Sum-of-Boxes (referred to as CDR-SB). This test is based on memory, orientation, judgment, community affairs, home hobbies, and personal care. In simple terms, this is a comprehensive cognitive test to see how well people function in the real world (as opposed to doing math problems or other tests).

There are 3 lines on the plot. The top line (green) shows those who were on Leqembi for the full 36 months. The middle starts out black and then turns green at 18 months. These are the people who were on placebo for the first 18 months and then switched to Leqembi. Today, this might illustrate people who might delay starting Leqembi for some reason for 18 months. Notice these folks never catch up to those who started on Leqembi at the beginning - the cognitive damage is not repaired by Leqembi. The bottom line (pink) is labeled ADNI, which stands for Alzheimer's Disease Neuroimaging Initiative. This data is from outside the Leqembi clinical trial. Long ago, a group tested the general progression of AD in terms of scoring on the CDR-SB test for those not receiving any medication. The black line (those on placebo) closely matches the pink line (ADNI) for the first 18 months, as expected (i.e. 2 different groups of people not receiving any medication are all slowly declining in cognitive capability due to AD). But starting at 18 months, the group that switched from placebo to Leqembi diverges from the ADNI line. This is good, as it shows that even those who start Leqembi "late" can still get some benefit.

I posted earlier today in this group about a press release earlier this week from Eisai regarding "maintenance" dosing for Leqembi. The maintenance dosing is a proposal from Eisai to the FDA to switch people from their original prescription of Leqembi to a maintenance dose. In the press release, Eisai noted they are working with the FDA to define exactly when people would switch from the original dosage to the maintenance dosage (i.e. is it at 18 months, or 24 months, or something in between, or maybe something after 24 months). As I understand the Eisai proposal, after a specified number of months of biweekly initial treatment, patients would switch to a monthly maintenance dose. In the press release, FDA indicated they set an "action date" of Aug 31, 2025 for Eisai's application. This is the date when the FDA will supposedly announce their decision on the Eisai request.

It has never been clear to me what happens to people who started on Leqembi soon after it was approved (i.e. people like you). Yes, you are coming up on the 18 month magical date for the original Leqembi Phase 3 drug trial. However, people on the Leqembi trial were permitted to continue the bi-weekly IV infusions, if they wished. I'm guessing this is perhaps a question for the insurance company - will they cover payments for Leqembi after 18 months? Or might they wait for the FDA to approve the Leqembi "maintenance" dosing? To ask it another way, for everybody currently taking Leqembi, are our prescriptions non-renewable after 18 months, based on the current FDA approval for Leqembi? Or do the prescriptions renew indefinitely? I have searched the literate for Leqembi carefully, and found no answer to this question. In the letter I received from my insurance company when my requested service for Leqembi was approved, the request has an "end date" of May 15, 2025 (one year after the start date) and for 999 units, without defining what a "unit" is.