Leqembi: Anyone else taking this infusion to slow dementia?

@sasham My husband's thoughts are we have to try something, that is why he is getting the infusions. We are trying to prolong our quality time together and I cherish every day. It is not the right choice for everyone as circumstances are different. Next week will be infusion #48. He has not missed one on this journey. We had a PET scan done in August 2025 to compare to the one we had done November 2023 and the amyloid plaque was reduced from 78 to 12 on the scale they used to measure. Because there is still plaque present, he is considered amyloid positive and Mayo doctors recommended staying on the 2 week regimen until February and repeat PET scan. This is what we will do as we trust the Mayo doctors. You will make the decision that is right for the two of you.

I am in Stage 3 Alzheimer's and, personally, I have been prescribed around 55 drugs that caused me to have adverse reactions. You won't get me to try this just to get 5 more months. I'll admit I have a major problem with meds. but I think Leqembi is still very early in its investigative stage. Don't forget that drug companies are in this for a profit. Wait until a good independent randomized and masked trial tells you how effective and safe any proposed drug is unless you are feeling desperate and are willing to face possible consequences. My opinion....

@badlandsgirl
It’s great that you can see positive results of reduced plagues in his brain. Do you notice any changes in his cognition?

@badlandsgirl
Did your local neurologist suggest anything else? I definitely will ask about the Pepcid. and blocking histamines.

@kjc48 He premedicates with 2 Tylenol and 1 Claritin right before infusion and then follows up with 1 Tylenol 6 hours after the first and 1 additional Tylenol after another 6 hours. This helps from getting the extreme cold he was feeling.

A little off the current discussion but thought I would add my experience with my wife who was diagnosed earlier this year. She has gone through 5 Leqembi infusions and luckily no major side effects. Some nausea and fatigue but otherwise she is doing good. Some have asked if anyone can tell if the infusions are helping and I have a method (not scientific by any means) to see if the infusions are helping. Early in the journey my wife and I would play backgammon. She struggled but it was good for her. I noted parts of the game she struggled with to get a baseline of where she was at. After her 4th infusion we played again so I could see how she did. She actually did better in the areas she struggled with in previous games. I've done that with other things to see how she is doing and I am very cautiously optimistic about her progress. Ultrasound was mentioned but there are two other promising trials either getting ready or has started. A drug called Trontinemab and another called AADVac1. You can read more about each of them at clinicaltrials.gov.

Good luck to all.

We are in month 17 of the 18 month Lecanmab protocol.
He has tolerated the treatments and his last cognitive testing was unchanged, so I believe the treatment has helped. ( he still does goofy things, but no new deficits)We will have an MRI and PET scan before planning the next step: maintenance and or attacking the Tau.
The past year and a half has revolved around the infusion appointments. We also moved and renovated, but managed to take a short vacation.
He’s fine. I’m exhausted.
I enrolled him in speech therapy , which helped a lot and PT which helped his balance and gait- very helpful since we still have lots of boxes to weave around.
I hope this is helpful