Leqembi treatments for early dementia

Calibird

Hello everyone. So my neurologist is sending me to a specialty clinic that does infusion Leqembi treatments. I was wondering if anyone here has been on it and if they have had any problems with brain bleeds or brain swelling. I'm trying to learn as much as I can about it so I can ask the right questions to the specialist. any help or advice is much appreciated

Calibird

South Dakota Dave

I was diagnosed with Alzheimer’s in April 2024 and decided to try Leqembi. Our local medical system is not helpful; we decided to drive 635 miles to the Mayo Clinic in Rochester MN. I and DW found it the best thing we ever did; our Mayo Dr’s will react quickly when needed.

I was one of Mayo’s 14 Alzheimer’s patients. The required infusions started on January 2024; this January 2025 I will have 27 infusions, each following two weeks apart each in a hospital completed in about 2 ½ hours.

A few days ago, we heard of a new FDA approval scheduled for Leqembi that will be sometime after August 2025. I am much more hopeful now because we find Eisai (the owner) Leqembi has already been using their subcutaneous (SC) injector with Leqembi which gets us out of the infusion center into a new at-home procedure to administer Leqembi much faster and less costly and is showing the SC formulations resulted in 14% greater amyloid removal!

It may be helpful to know that anyone that has Medicare, I’d suggest getting a good health supplement also. Reason: Medicare pays for Leqembi (great!) but the required infusions are not covered. In my state (South Dakota USA), the cost for that is $1600 each month. BUT our supplement insurance covers it 100% with only a $190 cost each month.

We’ve learned a lot from the 27 infusions and would be glad to help with any questions or concerns about Leqembi.

BJH73

Have you noticed any difference in your thinking and has it slowed the progression?

South Dakota Dave

Sorry, it’s hard for me to tell. Of course, my neuropsychologist first evaluation was not good. But I am glad I have Leqembi.

khirsch

https://alzconnected.org/discussion/comment/234653#Comment_234653

Just starting treatments, do you feel different. Has it been worth it? Did you have any adverse side effects?

South Dakota Dave

My first infusion was rough; after that one we worked with Mayo Clinic, they advised us to take 2 Tylenol Extra Strength & 1 Claritin just before Infusion, then slowed the drip from 1 hour to 2 hours which we now do every infusion.

I feel a bit more tired (I'm73), my head occasionally does feel different; I can get cold at night. but in general, I still do about the same things… cut down large pine trees, drive heavy equipment, etc.

I think this is the only way to be better.

bbeasley

Hi all, this is Brent. I’ve been on lacenemab for about a year. It has been very helpful for me. My wife says she has her husband back.

Calibird

thank you all for contributing your experiences. I'm nervous but I just found out my referral was approved through my insurance. Hopefully I'll get the treatments going within the month. thank you all. 💜

texeattle

I would love to know as well. I want to talk to people that have done the infusions and see if they notice a difference. I go Wednesday to memory clinic to begin the process to see if I qualify. I was diagnosed 1/23/25.

JustLive

My hudsband has been receiving Leqembi infusions for 6 months. He has had no bad side effects. Just gets a little tired. It was a long journey to start treatments because our health insurance played many games with us. If it weren't for our brilliant neurologist who fought for us we wouldn't have won our appeals!!

Bobscape

I am 75 years old and had my 19th infusion last week. I am under the care of Mount Sinai’s Wien Alzheimer’s Research Center in Miami. My condition is pre-clinical (I can pass the memory and cognitive tests) but PET scan shows a worrisome amount of Amyloid plaques. And there is family history. My expectation is that the Leqembi will slow disease progression. I have not detected any memory or cognitive changes since I began the program. My wife agrees. I had flu-like symptoms after the initial infusions. Now I might get a slight headache a few hours after the injection. Tylenol takes care of that. I still have trouble sleeping the night after the infusion. Very fitful.but no issues after that. I am fortunate for the early diagnosis and my goal is to keep more serious consequences at bay. I exercise (I love bike riding) and exercising my mind with word games and staying up to date and involved with technology. My diet is OK, but I will never pass on ice cream. I do not eat much red meat. I have stopped drinking alcohol. That was hard. I really enjoy a good Scotch in the evening. I am not shy about having Alzheimer’s, and will share my experiences freely. I believe folks have been too secretive about it, when sharing might raise awareness and help others.

texeattle

Thank you for responding. It's good to hear other's stories.

texeattle

https://alzconnected.org/discussion/comment/236650#Comment_236650

THANK YOU for sharing. Do you notice if it is helping?

Calibird

https://alzconnected.org/discussion/comment/236651#Comment_236651

thank you for responding. I like hearing the diffferent experiences with this new drug. I'm hoping I qualify. My nuerologist believes that I will but I have to go to a different clinic because his office does not do the treatments.

Laura2020

It was a roller-coaster of ups and downs trying to get approved for this treatment. My insurance has been a nightmare! Finally started treatment on January 15th. I've had 5 treatments. My first infusion was the hardest because of chills, tiredness and a headache. But as I continue on it definitely has eased up. It's been totally worth any risk.

michelleb65

thank you all for your stories. I am just beginning the process and hearing that folks are having good results gives me some peace of mind.

lorainesjoy

I highly advise that you know what your genetic profile is, prior to starting any treatment.