Leqembi

Rose Airy8

Curious if anyone has seen any improvement with their loved one receiving infusions. My DH has had 10 and we have a long way to go but I’m not feeling very hopeful.

M1

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....

harshedbuzz

@Rose Airy8

The medication was explained to me as intended to slow the progression rather than improve function.

https://www.alzinfo.org/articles/treatment/5-things-to-know-about-the-new-alzheimers-drug-leqembi/

Rose Airy8

I thought it was only to hopefully slow the progression too until the neurologist suggested we could see some improvement as it clears out some of the plaque. I tend to disagree as I actually feel it’s getting worse. Obviously time will tell but we really may never know if it’s slowed the progression. I’ll try to stay upbeat about this but it’s difficult.

Elizabeth607

https://alzconnected.org/discussion/69497/leqembi

My DH has had 8 infusions and 2 MRIs. No brain bleed. He thinks he is better, but I don't see that he is better - maybe he is not worse. I would not necessarily be able to measure it, without know what he would be like if he wasn't receiving the infusions. I would say he is straddling stage 4 and 5. He was officially diagnosed with AD in January.

dayn2nite2

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.

ImMaggieMae

https://alzconnected.org/discussion/comment/212335#Comment_212335

I didn’t realize the drug could be used in stage 4 or 5. I thought it was for MCI or very mild stages only. But I’m glad they’re trying it with later stages as well. I think measuring progression will be the difficult part. Is he taking any other Alz meds while he’s getting the infusions, like Aricept or Memantine? I would imagine not. My hope would be that the progression would be slowed more than they’re predicting and other treatments come along in the meantime. Keep us posted on how he’s doing. A lot of us are interested.

Elizabeth607

https://alzconnected.org/discussion/comment/212463#Comment_212463

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.

midge333

This type of stuff happens when drugs move from studies to the real world. Indications for treatment get "stretched" and contraindications get ignored. This often leads to increased incidence of adverse outcomes.

cavenson

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."

allit

https://alzconnected.org/discussion/comment/212471#Comment_212471

my wife has been offered Leqembi by her neurologist. they did the cognitive tests and a lumbar puncture to get the amyloid and tau numbers. when they submitted that to the insurance, the insurance insisted on a PET scan as well. i'm curious, did your husband have the lumbar punction or the PET scan or perhaps both. i'm curious what other people's lab values are for the amyloid and tau. i spent a little bit of time digging into how the medical community decided on certain cutoffs for lab values. and i'm also curious about levels, like is there a level that corresponds to MCI and early onset Alz which would make someone a candidate for Leqembi? and then another level that corresponds to more advanced disease which would rule them out as a candidate for Leqembi?

Elizabeth607

https://alzconnected.org/discussion/comment/215825#Comment_215825

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…..

M1

Elizabeth: probably important to note that the studies on Leqembi have NOT shown improvement over baseline function. What they have shown is about 30% slower decline. So you really wouldn’t expect him to actually get better. According to the manufacturer’s website, this translates to about 6 months of retained function compared to the group that received placebo.