Leqembi

Welcome to the forum Rose. There aren't very many people yet who have received treatment- you are definitely one of the first. I'll be interested to see what responses come in. Hard to know if you should really expect to see improvement, the harder question may be whether he doesn't deteriorate further. Important distinction i think....

All I'll say is I hope the infusions are free for you and he's tolerating them well, because I have absolutely no faith that you're going to see anything of worth from all of this.

He has been and is still taking Donepezil (Aricept) since September 2023 and added Memantine in October 2023. He has exhibited signs of serious noticeable cognitive decline for about a year if not longer before his first Neurologist appointment in July 2023. His first Leqembi treatment was on February 28, 2024. The stage is a guess on my part after reading the Tam Cummings literature. There are still a lot of things he can do - not well - but do, as long as it was something he was used to doing in the past with some exceptions and sometimes some guidance. He breaks a lot of stuff, makes a lot of messes and is as slow as molasses. He also suffers from OCD and ADHD (takes Nuvigil for that). Last week his infusion Nurse asked me how he was doing with the treatment and I told her the same I mentioned above and she said she had patients that were far worse than my husband in the Leqembi treatment. I told her I was surprised to hear this based on the guidelines for acceptance. She didn't say anything.

My DH is not currently receiving Leqembi infusions. However, his neurologist at a medical school recommended it at his recent yearly evaluation. DH was diagnosed with MCI in 2018, and the diagnosis was changed to Alzheimer's about 3 years ago. We did check into his participation in a research study for Leqembi about 5 years ago and were told that the cut-off age was 80. At this recent visit with the neurologist, he questioned DH about things he liked to do—one of which was cook. He can still follow a recipe and likes to cook crockpot meals (though the preparation takes him much longer than it used to). The neurologist tried to sell DH on taking Leqembi by telling him the drug would probably enable him to do this activity another 5 months. He also said the gerontology clinic at the medical school already has 20 people taking Leqembi and that Medicare will cover the full cost. DH is 85, so I questioned the age and was told that they can administer Leqembi to patients as old as 90. He said DH (who I would guess at stage 4) is still considered ES. Considering the risks of side effects, such as brain bleeds, the need for infusions every two weeks along with MRIs and other tests, and the limited benefits—particularly for someone 85 years old, we probably won't pursue it. I am, however, glad that this Alzheimer's advance exists. I agree with the editorial statement in today's Wall Street Journal, "I remain hopeful that this first class of therapeutics is merely a starting point as scientists build out an arsenal of drugs necessary to stop Alzheimer's."

The final step was a PET scan, no lumbar puncture. The findings were "increased Amyvid uptake throughout the cortical cerebral matter. Most intense uptake is seen in the prefrontal, lateral temporal, and parietal areas, with these areas showing clear loss of the normal gray-white contrast. The cerebellum has no evidence of abnormal uptake. The scan is positive, indicating moderate to frequent amyloid neuritic plaques."

He has had 10 infusions to date. Regarding does it help - I'm thinking it might help on the day of the infusion. We went to the bank right after to open an account. He had no trouble providing correct information of which he would usually defer to me to provide the missing parts…..