Lacanemab experience + Patient Experience

Hello, my Dad was recently (barely 2 weeks ago) Diagnosed with Alzheimer's and he is scheduled to start this medication treatment in about 2 weeks. They have it scheduled as a 2x monthly infusion set to last an hour each. The first month is set to be at a heavily monitored clinic, as they want to keep track of how he handles the medication and if side-effects appear. After that he will go to our local clinic. We were told we are the only provider in my state where this is being used to treat Alzheimer's.

I can tell you according to information posted here on the site. One has to be enrolled in a certain program to qualify for this treatment and It is not cheap! Without insurance it sits at $26,500 a year. We were given a price of $400+ per month.. with ever possible benefit and discount available.

Its a lot to take in and realize that you or a LO may have to give up certain other luxuries in order to afford the service needed to treat an ailing LO.

https://www.alz.org/alzheimers-dementia/treatments/lecanemab-leqembi

https://www.alz.org/alzheimers-dementia/treatments/navigating-treatment-options

Disclosure: Larry himself has stated in this forum that he doesn’t have dementia.

Marta, as I stated in my profile, starting in 2015, I was having extreme mental fatigue. I believe that I would have gone in the same direction as my mother who was diagnosed with Alzheimer's and passed away from the disease about 2 years ago. Certainly I can't prove I would have developed Alzheimer's if I had not started taking the anti-inflammatory drug montelukast multiple times a day. But one day we will know if it works when Emory finally announces its results. If Emory doesn't come through, there is another montelukast Alzheimer's clinical trial scheduled to be completed in April next year in Canada. Let's wait and see.

My mom has been receiving leqembi/lecanemab infusions since Oct 2023. I am hoping to find others with LO receding the infusion to find out what their experiences have been.

My experience is… at first, the hope that she might be able to keep her current level of independence was a huge boost to our mental health. She had the incremental MRI scans and there is no bleeding or significant changes in her brain size. However, over the past few months, both I and my dad’s caregiver have seen noticeable decline in my mom’s abilities. She used to have a morning routine of getting up to have coffee and get dressed. Now, she doesn’t know the first step once she’s awake. She changes clothes less and less, sometime wearing the same clothes for days in a row. She’s stopped showering and washing her hair. She’s forgetting the names of people who are very close to her. She’s barely able to use her cell phone anymore. These are all very similar to the changes I noticed in my dad in 2019 when he was in the early stages of his Alzheimer’s. These are also all things that she was steadily able to do for herself since she was diagnosed in early 2020.

I reported these changes to her doctor, and I only received a message that the Dr would conduct a cognitive test in August 2024, which will be just a couple months shy of her having been on the infusions for a year. I may have been naive but I’d assumed that there would be an amyloid scan that would show whether the amount/coverage of the protein was holding steady or if it had decreased. According to the doctor, the very expensive amyloid scan that’s required to be considered to start the leqembi infusions is only a positive or negative test that confirms the presence or absence of the protein. So, testing the drug’s effectiveness will come down to her answers on a cognitive test.

I know we are VERY fortunate to qualify for this treatment, and that insurance covers it. That said, the time commitment is significant and if we’re noticing decline, it becomes more and more difficult to justify giving her a fast-tracked drug (this is what a researcher called it when we had to register for a new database to continue receiving insurance coverage of the drug). I’m wondering if anyone else is being faced with the decision and largely being left to their own devices. It seems that bc it legal reasons, the leqembi Liason and the infusion nurses and everyone else besides the Dr are not able to give me satisfying advice that would make me feel confident about continuing treatment. The Dr is never available except for the 2x a year my mom is in her office. This forum is my only other hope.

etjames, I can only imagine how disappointing your mother's decline is after going through treatment this long. I am so sorry. Our experience is not really helpful to you, but I am sharing in case it might be helpful to others, as M1 said. Your post did answer my question about repeating the PET scan. That was disappointing to hear.

My husband and I make a 2.5 hr drive to the infusion center at a prominent university hospital, where he was first diagnosed with MCI due to AD last fall (we usually stay overnight). There are probably at least 100 patients receiving treatment at this clinic, and some drive farther than we do. Husband has two copies of the APOE4 allele, which increases his risk of side effects, but is otherwise in excellent health. We finally made the decision to try lecanemab, and he began infusions in April. After the fourth infusion, the scheduled MRI showed evidence of several microbleeds, so treatment is on hold. He has had no symptoms and is still willing to continue if the doctor allows. But I am frightened. He will have a follow up MRI one month after the previous one to see how he is doing. That may determine whether he can continue or not. For me, it's like living under a dark cloud.

There are several discussion groups on lecanemab/Leqembi on the forum, so be sure to check and or post in those, as well. I know waiting til August to see her doctor is frustrating. Please keep us posted. All the best to you.

thank you! I’m glad to be able to talk to other people on the same journey.

update ::
I originally came to these threads on leqembi at the encouragement of the wonderful Alz Assoc hotline. I’m so thankful for this forum.

In that same call, which was mostly me brainstorming about how to get advice on whether my mom should continue the leqembi infusions, I realized I could check with her longtime physician to get his opinion. He has always been straight forward and practical, especially in the early days of my mom’s diagnosis when he referred her to the neurologist. He thoughtfully responded with a measured answer to all of the decline I was seeing. Ultimately, he advised that in general, a drug should help and not hurt. The neurologist has been so gung ho about leqembi that I’d started to feel like my opinion and daily observances of my mom’s decline since she started the infusions didn’t matter. Her physician assured me that my observations are very important, and that if he were the one deciding, he would stop the infusions immediately. In addition to the findings that leqembi is not as effective for women and can possibly increase decline for people with the double E4 allele, I felt clear about my decision.

When I was ready, I wrote an email to the neurologist to make her aware that, after gathering a lot of info on my own, that my mom and I wanted to discontinue the infusions. I bullet pointed all of the ways she’s declined over the last few months. I explained that I’d consulted a trusted doctor and linked the medical paper about increased decline.

In an unprecedented move, her office called me the very next day saying that they wanted to bring my mom and I into the office. I explained that I didn’t think she could give me any information that would change my mind about stopping the drug. The nurse said they’d want to examine my mom. I replied that we’d just been in their office a month ago for a lengthy cognitive (and emotionally painful) test with their researcher, and couldn’t the doctor reference those answers instead of us devoting 3 hours to coming in to her office? The nurse explained that cognitive test was administered by a PhD, and that the neurologist is a MD and needs to medically examine my mom since she is unexpectedly declining. I had already reported her decline a month ago. The only difference now is that I’ve definitively said we are discontinuing leqembi. I hate to be suspicious, but this is the most attentive the neurologist’s office has ever been in the last 4 years. Typically, they respond in 3-4 days if at all. I’m just really disappointed and angry with the reality of Alzheimer’s neurological care. I hope this info helps anyone else who’s feeling frustrated with a lack of info.

Etjames i have to say that I'm not surprised. Sadly, what you report is common. They didn't listen when they should have. There is absolutely no reason for you to accommodate them, it won't benefit you or your mom.

you are fortunate to have a good general physician for her. I would ask him if he is comfortable potentially prescribing for her in the future. If not, this may be a good time to ask for a referral to a geriatric psychiatrist, who may be more help with behavioral issues later on.

overall I'm still in the camp of being quite skeptical about what neurologists bring to the care of our loved ones past initial diagnosis.

luckily we are already in the care of a really lovely geriatric psych. that is such a good suggestion to ask which medications her physician good take over prescribing. I don’t know if it’s allowed for me to name the facility where her neurologist is, but I’m considering switching to a different memory specialist office here in Dallas.

My husband’s doctor has canceled his treatments. To recap, husband has two copies of APOE4 and had four infusions at half dose. The scheduled MRI after dose four showed at least 5 microbleeds, so treatments were paused. A follow up MRI one month later showed more than 10 new microbleeds plus an area of mild swelling. No symptoms. Husband and I had decided even before the follow up MRI to discontinue lecanemab because of the enhanced risk along with the inconvenience. We are actually relieved to be stopping, but still concerned about potential lingering side effects. Have his blood vessels been permanently damaged, even more than what AD had already done? Now we hope that Alzheon’s ALZ-801 pill, that has shown promise without side effects in trials, will be approved by the end of the year and that he will still be in early stages when it is available.