This is my first post. I am a caregiver for my DW who was recently diagnosed with MCI with an APOE 3/4. We will be having an important discussion soon with a neurologist who is going to present us with the two possible treatment options of either Lecanamab or Donanemab; but we are quite fearful of the possible negative consequences with adverse side effects and are seriously wondering whether or not we all as a family want to start down this road. Currently my DW has little short term memory with some agitation and takes Donepezil and Sertraline to help with agitation. Are there any suggestions from the community from similarly situated dementia family who might be able to share some reflections for us to consider prior to our meeting with the neurologist. We appreciate any stories you can share and thank you so much.
I was diagnosed with MCI in April 2024. I am also APOE 3/4. After much research, I elected to start on Leqembi. I just had my 15th infusion, with zippo reactions. I am aware of the concerns with ARIA (Amyloid Related Imaging Anomaly), which include swelling and bleeding in the brain. In the clinical trials, most occurrences of ARIA had no side effects (they were only noticed in the early mandatory MRIs whare are taken after the 4th, 6th, and 13th infusion). The few with severe ARIA had some nasty outcomes. However, for many of them, the issues went away after stopping treatment. Seems like life in general - there is always some risk, such as driving on a highway to visit relatives. There are lots of car accidents in the U.S. and tens of thousands of people die each year, but most of us don't worry about such things when we set off on a trip. I found the risk vs reward decision pretty easy.
Today there are the two products you mentioned. I happen to like to use the common names of Leqembi and Kisunla. The both had similar results in their Phase 3 trials in terms of percentage reduction in the Clinical Dementia Rating - Sum of Boxes score after 18 months of treatment (29% reduction with Kisunla, 27% reduction for Leqembi). If you are unfamiliar with the CDR-SB methodology, it is apparently standard in the AD world, determining how well people perform on a test involving memory, orientation, judgment, community affairs, home hobbies, and personal care. A score of zero in a category means no impairment, a score of 3 indicates severe impairment. As an example, for home & hobbies, a score of 0 indicates life at home and hobbies are well maintained. A score of 0.5 in this category indicates these abilities are slightly impaired, there is a mild but definite impairment for a score of 1, very restricted interests for a score of 2, and a score of 3 means no significant function in the home. In other words, this seems to be a very practical test to see how well a person can operate in the world.
Keep in mind the above numbers are averages over the entire population of those participating in the trials. The detailed numbers are available split by age (older folks had larger reductions than younger folks), gender (males had larger reductions than females), and APOE4 status (noncarriers had largest reduction, followed by heterozygotes, and then homozygotes). However, I think all of these are not so useful, as they include people with varying degrees of cognitive decline at the start of the trial. People in your shoes would really want to know how people of your gender/age/APOE4 status AND a specific starting cognition might perform with the drug. Alas, that sort of information isn't available.
Kisunla is dosed via a monthly IV, Leqembi is currently a bi-weekly infusion. Leqembi has been around longer (approved by the FDA in Jan 2023) versus a July 2024 approval for Kisunla. Eisai (Japanese company that manufactures Leqembi) likes to advertise that Leqembi works by "by continuously clearing protofibrils and rapidly clearing plaque" (quoting from a recent Eisai press release). Thus, people on Leqembi stay on Leqembi until their cognitive decline gets to a point where folks decide treatment should end. With Kisunla, treatment stops after amyloid is cleared from the brain.
Yesterday, Eisai issued a press release stating that the FDA accepted their application for a subcutaneous version of Leqembi for maintenance dosing (i.e. people could use this after 18 months or so of initial treatment). The idea is this shot could be performed at home, avoiding IVs. Again, this is for maintenance dosing only, folks still have to have about 18 months of initial IV treatment. The press release indicates the FDA set an action date for the Eisai application on Aug 31, 2025 (i.e. the date when the FDA might approve the Eisai application).
I am not sure how the end user costs compare for the two drugs. My co-pay for my bi-weekly infusions of Leqembi is around on $400. I'm on a private medical plan (not old enough for Medicare).
In other comparisons I've seen between the two drugs, nobody mentions the dosage. For Leqembi, the dosage is dependent on your body weight: 10 mg of Leqembi per kg of body weight. For example, my dosage is 600 mg of Leqembi (I weight over 60 kg which is 132 pounds, but they apparently round down to the nearest 100 kg). Kisunla is a fixed dosage of 700mg for the first 3 and later doses are 1400 mg. So if you are heaver or lighter than average weight, you might be getting less than average or more than average dosage of Kisunla, respectively.
I think the following website has a good comparison of Leqembi & Kisunla.
One other thing. If you use Facebook, you could consider joining the "Leqembi Support Group" (it is a restricted group so you have to request membership). There, you will find oodles of posts by people on Leqembi (very sparse posts by people on Kisunla). Many people have recently posted in their early infusions. Some had infusion-related reactions, such as nausea, which were also noted in the clinical trials.
While I'm posting again, below is a Table extracted from the paper explaining all of the adverse events in the Phase 3 clinical trial for Leqembi. It is a long list. From one perspective, the important thing is to compare the two columns (Leqembi vs Placebo), as you presumably are most interested in the impact of receiving Leqembi. But it also can be useful to compare the numbers between the two columns (such as a higher number of people who were on placebo had diarrhea compared to those on Leqembi).
Finally, the Leqembi website has lots of good information:
OMG thank you so much for this valuable and detailed aspects of this complicated decision. I assure you it will be very helpful to us. God Bless and best of luck with your own challenges.
I was diagnosed with Alzheimer’s; in April 2024. After dealing with local Dr.’s which failed us too often we decided to drive 635 miles to the Mayo Clinic in Rochester MN to confirm my diagnosis and see if I was a candidate for Leqembi. We found it the best thing we ever did. We feel it important that your neurologist is experienced with Alzheimer’s and a good match for you as well. Our neurologist is the only one could find in our community, barely versed on Alzheimer’s, but our Mayo Dr’s will react quickly when needed.
I was one of about 14 Alzheimer’s patients. The required infusions started on January 2024; to date (1/14/2025 now) I now have had 27 infusions each two weeks apart, each in a hospital completed within about 2 ½ hours. We plan to continue this until August 2025 when we return to Mayo. I will have a PET scan to hopefully continue on with Leqembi and soon enter in the new at-home program.
A few days ago, we heard of a new FDA approval scheduled for Leqembi that will arrive sometime about 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 importantly 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 currently 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 I've had and would be glad to help with any questions or concerns about Leqembi.
Oh thank you so much for your input. I think it will be very helpful to us as we possibly embark on either the Leqembi or Donanemab. My wife has an APOE of 3/4 and I guess we were concerned about the resultant negative side effects. Did you experience any of these and, if so, how bad were they and how long did they last? I agree that the upcoming start of the home-based injections is a very positive and hope-filled development. We are happy to hear about your apparent progress and positive experience with these medications. Thanks once again
I have no problem with the two APOE 3/4 genes, tested two times.
My first infusion was set to a 1-hour drip. It was rough, after that we worked with Mayo Clinic, they advised us to take 2 Tylenol Extra Strength & 1 Claritin just before Infusion, then we slowed the drip to 2-hour drip which we now do every infusion.
I feel a bit more tired (I'm 73), my head occasionally does feel different; I can get cold at night. but in general, I still do the same things, cut down large pine trees, drive heavy equipment, etc.
We certainly hope you have good infusions and a GREAT OUTCOME!
My husband was diagnosed with MCI and AD tendencies at 67. His Tau protein in the spinal fluid was literally one dot, on the graph, below for being positive for AD. He started Leqembi in May 2024, just had #19 infusion. He takes a premed of 650mg tylenol and 50 mg benedryl 30 minutes before we arrive, due to a mild infusion reaction including chills, a low grade temp, and being achey, after his first infusion. He also gets IV Push steroids 30 mins before the Leqembi starts. The day following he feels fine but is flushed. Tylenol or Motrin help with that. It does not keep him golfing or going to the YMCA. All his brain MRIs were unchanged so we have continued with the treatments. His disease process does seem to have progressed! That is what the med, Leqembi, is supposed to do so YEAH! He thinks he knows people and their names easier. He usually sleeps in the comfy recliner that is both heated and has a massage option during his infusion. I take my laptop or something to work on. During the winter I walk in the hall to my mile in and when the weather gets nice again I will walk outside. He still does not like change of any type, and still has trouble with following through to complete a project. Change is his biggest trigger. To make it easy on both of us I try to keep him in his comfort zone. Same breakfast every morning which he makes, he worked a factory so he likes the same type of lunch, which he prepares. Generally I try not schedule appointments in the morning because he like to go to the Y to workout. He has been asked to try pickle ball by some of the people there but that is change…. When golf season starts he will golf in the morning expect for that senior league one evening a week. I do not go the Y or the golf course with him. Driving to places he knows is fine but following directions is not good. If we are going somewhere different I do most of the driving. He is on Medicare and has a Med Mutual Supplemental insurance. The treatments are covered by both the insurances and we do not have a co-pay.
Best Wishes to you and your wife. I hope all goes well.
You both manage a good life with Alzheimer’s, and it is very effective.
I’d like to know more about "IV Push steroids 30 mins before the Leqembi starts".
Last Monday we attended the South Dakota Alzheimer's Association held an event at the state capital to advocate for increased funding for Alzheimer's caregiving. The objective was to obtain additional time, support, and financial resources necessary for effective home care.
Previous attempts at this initiative failed. This year, a concerted effort was made, and the bill received a recommended TO PASS outcome for the first time!
After experiencing numerous medical failures when seeking help for Alzheimer's locally we drove to the Mayo Clinic in Rochester MN. Best thing we ever did. We became an advocates for better medical training to support the newly diagnosed Alzheimer’s South Dakotan’s. Despite writing and publishing letters to editors, my efforts have not been sufficient.
I told the SD Alzheimer’s Association that caregiving funds are valuable, but doctors also need more education in Alzheimer's care. Proper use of Leqembi could save more money, especially with Medicare coverage and upcoming at-home infusions in August.
I was the first person to use Leqembi in SD. I have not found anyone else in western SD other than us so far. A local doctor prescribes marijuana for Alzheimer's, others are creating parabolic chambers, helmets, etc. to treat it. Still the wild west here. We finally started to find folks trying Leqembi or Kisunla about 6 months ago in eastern SD.
Thanks for sharing. I appreciate this. So I guess from what you explained that the Leqembi has helped. Did the Tylenol or Motrin help with some of the after effects? My wife likewise seems very comfortable to sit in the same place and make the same breakfast ; but yet still seems to be restless and sometimes compulsively cleans. We're hoping to possibly start Donanemab soon. Naturally my anxiety level is starting to increase. Hoepfully when the weather breaks I'll be able to convince her to go for walks with me. I agree that these patients seem to find comfort in their routines but form me it can be quite unnerving sometimes. Good luck with your husband. I hope he continues his Y workouts and golfing games as long as he can. Maybe the meds will slow things down a bit. Thank you
Just curious—did the taking of Tylenel before and the slower drip help you cope better with the infusions. I hope it's helping slow down the progression for you. Keep taking down those trees. Good luck
I take two Tylenol and one Claritin just before infusion at 9 am, then 6 hours later two Tylenol and again 6 hours more one Tylenol. If you buy it yourself the cost is about $2.10 at the infusion center (you must tell the infusion center that is OK'd by a neurologist). If it was provided by the infusion center, it's $12.44 just for the two Tylenol & one Claritin and you'd need to buy more Tylenol for the two at home that same day.
It's hard to know what happens once you start doing it, but the two Tylenol later at home day seem to be very simple to do.
We are burning tree limbs today!
There is an interesting April 2024 article on BeingPatient.com titled "Alzheimer's Rates are Highest in these Counties without Leqembi Access" (link provided below). The article notes that North & South Dakota are among the 11 states with 5 or fewer Leqembi infusion sites (probably not news to South Dakota Dave).
The article included the following spiffy graphic showing the geographic distribution of the Leqembi infusion sites in the US.
LBC83 can find anything possible of interest to those of us who are dealing with Alzheimer's, he finds the latest news which relates to Alzheimer's and often it has very good news.
To find me & DW on the map I are the ones on the west corner of SD (we drove 625 miles to get Leqembi at Mayo Clinic in Rochester MN). Until recently I was the only person in the whole state that has tried Leqembi (and likely not Kisunla as it appeared later), we now know of at least six Alzheimer’s patients using some medical help in the Sioux Falls area.
Our neighbors North Dakota & Wyoming seem also to be among the fewest in the USA as of now.
Thank you for this! We are in the Texas Panhandle. Leqembi infusions were not available here last year, but are now. I'm not sure about availibility of resources, because our neurology resources here are limited, overall. DH's neurologist recommended Kisunla this week during DH's 6-month checkup, and we hope to know about approval in the next week or so.
DH was diagnosed with Early Onset, APOE 4/4 last spring (2024). When his neurologist recommended Leqembi, we opted out for multiple reasons, including risk factors vs uncertain gain, plus cost and 7-hour distance from home weighed against those risks.
The risk factors with Kisunla are arguably even higher than with Leqembi, but time has given us different perspective and opened new opportunities, so we've decided to try it. Someone has to be the first survivor of this disease, and we'll never know if we don't try.
It appears you have done your homework regarding the risk vs rewards for the two available anti-amyloid drugs. You might want to review the following summary of the Kisunla Clinical Use Guidelines, presented at a conference in 2024.
