Leqembi: Anyone else taking this infusion to slow dementia?

Are you still pleased with the treatments? Any negatuve side effects??

@sasham
Amyloid plaque is a key finding in Alzheimer’s Disease.

Let’s see, it is sort of like heart disease. You have calcified arteries and as a result you have heart disease.

In the case of Alzheimer’s, you have amyloid plaque - a sticky substance that adheres to the surface of the Brain and interferes with neurons ability to communicate. And that impact on how the brain can connect and carry signals across itself is Alzheimer’s.

I believe the medicine he is taking is designed to breakup and remove the amyloid plaque over time.

It is confusing isn’t it?

@badlandsgirl

They really are. I am working on being a big girl and be happy for the people lucky enough to be admitted into the trial. 🙂

I'm glad you posted a note. My husband also had his 5th lequembe infusion, and so far two MRI's inbetween. We're being told before the 3rd 5th 7th and 14th infusion, they have to do an MRI to make sure they check on no problem, brain swelling or brain bleeding. To date, he's doing well; I did notice that he was tired around the 3rd or so infusion. It seems to be getting a bit better but we've had a lot going on. It's good to hear that mayo said your husband was a good candidate for the lequembe infusion. We felt we needed to do it, I was nervous but my husband optimistic, and that's a good thing. Keep me posted on how your husband does. And I"ll do the same.

@kjc48 You might ask your neurologist, our local neurologist suggested taking Pepcid a few days prior to infusion to possibly help with tiredness. Apparently Leqembi releases histamines which cause tiredness and Pepcid blocks the histamines. (If that makes sense) My husband is trying it, not sure if it is helping or not.

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.

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

I haven’t monitored progress but two available drugs are now approved..

….While many drugs are in development, some have also received approval, like lecanemab (Leqembi) and donanemab (Kisunla).