Infusion Treatments Leqembi vs Kisunla which is better treatment?
Comments
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There are other opinions on this elswhere in the site. I chose Kisunla because it's only once per month and not every 2 weeks, which is just esier for me!
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I chose Leqembi due to the fact that it not only sweeps placque from the brain but also the little precursor to plaque maybe called fibrils. I apologize, I can't remember the proper name.
GE
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The prior two posts hit two of the key differences between Kisunla & Leqembi. The first key difference is the infusion frequency: bi-weekly for Leqembi, every 4 weeks for Kisunla. Another key difference is related to this infusion frequency. In order to last for 4 weeks, you need to get blasted with a high dose of Kisunla so it lasts for 28 days. Unfortunately, one of the negative aspects of both Leqembi & Kisunla is ARIA. This pleasant sounding acronym is really dangerous: brain bleeding and/or swelling. One of the key drivers of ARIA is the peak amount of the drug in your system. Thus, the higher dosing with Kisunla to get the drug to last for 28 days results in higher ARIA rates compared with Leqembi. In simple terms, your chances of brain bleeding / swelling are higher with Kisunla compared with Leqembi. But the ARIA rates for both drugs are relatively low, and most cases of ARIA have no symptoms (i.e. people find out they have ARIA withy one of the regular MRIs that are performed to check for ARIA after starting treatment).
Then we get to the mechanism of action of the two drugs. As noted by another poster, Kisunla soley removes amyloid plaque. Thus, for those on Kisunla, after a blood test or PET scan or lumbar puncture shows that the treatment has resulted in amyloid clearance, treatments with Kisunla are stopped. Again, the sole point of Kisunla is to remove amyloid plaque, so once it is all gone, what is the point in continuing treatment? The amyloid rebound rate is very low, it isn't as if in a few months you will again have lots of amyloid in your brain.
In contrast, Leqembi is "dual-acting", as it removes both amyloid plaque and amyloid protofibrils (the technical term for itsby-bitsy teeny-weeny particles of amyloid). It turns out that amyloid protofibrils are also damaging to neurons, so they are nasty to have around in your brain. So people being treated with Leqembi can go throught the standard 18 months of treatment and be amyloid clear. I happen to be an example of this case, I recently completed my 18 months of Leqembi infusions. I then had a blood test, which showed I am amyloid clear. However, I am continuing on with Leqembi maintenance dosing (the technical term for continuing infusions after the initial 18 months of treatment). The dosing frequency changes with Leqembi - the biweekly infusions for the first 18 months transition to maintenance dosing every 4 weeks (i.e. Leqembi dosing changes after 18 months to match the Kisunla dosing schedule). There is also a new option now available for Leqembi maintenance dosing - forever be done with infusions and switch to subcutaneous shots (which can be self-administered at home). Earlier this week I had my first Leqembi maintenance infusion, I hope to switch to the IQLIK (the name for the Leqembi subcutaneous shot), which I would administer weekly.4 -
Commencing immediately, I will be referencing the technical term, "itsby-bitsy teeny-weeny particles" for all future references to amyloid protofibrils in any and all, current and future conversations, both written and verbal....... 🥰
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I have chosen to cancel the infusions.
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I was chosen to be a good candidate too 6 mo. ago. I have chosen to cancel the infusions.
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Thank you so much for this! What was your side effects?
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Like most people in the clinical trials, and in real-world studies with Leqembi, I have had zero side effects. I walk out of an infusion the same as I felt when walking into the infusion center. This week immediately after my infusion, I went to a brutal Yoga class at the YMCA (i.e. lots of challenging poses), then I ran a couple of miles on a treadmill. Later in the day I had a teleconference about a potential speaking engagement about AD, and then in the evening I played handbells in a church bell choir. The day after my infusion I attended another fitness class at the YMCA, ran 4 miles on the treadmill, had a video appointment for an upcoming 10-year colonoscopy (fun, fun), and then walked over to a technician to have wax cleared out of my ears.
This is not to diminish those who do suffer side effects from anti-amyloid medications. The two basic categories are infusion-related side effects (i.e. just due to getting the infusion itself, not the active drug) and ARIA due to the anti-amyloid medication. Common infusion-related side effects are apparently often successfully managed with over-the-counter medications. ARIA is most commonly found via the MRI scans after the infusions (i.e. most cases of ARIA have no symptoms). But in a very small fraction of people receiving anti-amyloid medications, these folks do experience severe symptoms from ARIA. So the anti-amyloid medications should not be treated lightly, they can have serious side effects. But again, these serious cases are not common (that thought isn't so helpful if you happen to be the one that has serious side effects).1 -
Any memory changes?
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I always struggle to answer that question, and not because I have MCI :)
As the clinical trials for Leqemb/Kisunla showed a slowing of cognitive decline compared with placebo, a first question for me is along the lines of your query. Namely, has my cognitive decline slowed? My stock reply is that I'm an Enginner by training, so to properly address that question, I'd have to project where I'd be in terms of memory decline today without treatment, and then compare that with where I'm actually at. I have no clue as to how to estimate the former.
My stock reply is that I took a MoCA (Montreal Cognitive Assessment) before starting on Leqembi and another 15 months later. I scored the same. I take that as a success.1 -
Hi Mo77,
I am on Leqembi and just completed my 6th infusion. I can share a bit of rather subjective information of how I feel Leqembi has helped. I have recently recovered my "minds eye" which for me is the ability to picture something in my head. For about the last two years I have not been able to conjure up a mental image of anything I was thinking, dreaming or talking about. All I "saw" in my minds eye was total darkness. As a part-time artist and a previous vivid dreamer, it was devastating to me. However, about after my fourth Leqembi infusion, I had misplaced an important item in my house and started to panic. However, seconds later, an image popped into mily mind, showing me where I had last set it down, and I went and got it. Additionally, this past Christmas, I was once again able to make handmade gifts, as has been my tradition for 20 plus years, specifically because for the first time in at least last two years I was able to imagine in my minds eye, what the gifts would look like and therefore I was able to create them. I can only attribute my newly reacquired abilities to the Leqembi infusions because there have been no changes in any other meds etc. Additionally, I feel significantly less "brain foggy" in general.
geh
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I totally understand what you mean by " Mind's Eye" as well as the fog. I can't see anything resembling a picture in my memory, just dark. I do miss that. I cancelled the infusions, but your info. makes me think I should have gone on with them. I don't remember any dreams. I was diagnosed with mild alzheimer's 6 months ago. I would like for you to email me to stay in touch is you don't mind, and if you should happen to see this message. My email is: [email protected]. My name is Dorsey. Thank you
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😂
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if you are deemed to already have severe cognitive impairment, are these treatments less likely to be helpful/are you less likely deemed to be a candidate?
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Both Leqembi & KIsunla were only approved by the FDA for treating individuals with mild cognitive impairment (MCI) and mild dementia, thus excluding those with moderate and severe dementia. This follows the protocol used in the clinical trials for both drugs, where they were tested in patients with MCI or mild dementia. One presumes the driving concept behind excluding those with more advanced AD is similar to the old adage about closing the barn door after the horses have departed. Both drugs excel at removing amyloid plaque, and when taken very early in the progression of AD, they are very good at maintaining cognitive levels or slowing decline. But the more advanced the AD, the less effective these drugs are at reducing the cognitive decline. They still excel at removing amyloid plaque, but as noted above, they aren't addressing tau tangles, and thus the wisdom of starting treatment for somebody with severe impairment is in question.
It clearly would be nice if these were miracle drugs and they repaired the damaged neurons and restored cognition for anybody with AD at any stage. But unfortunately, that is not the case.2 -
Hi GEH,
That is great to hear. After making it through all the hurdles of getting a diagnosis of MCI, I'm waiting for the final approval of the Kaiser Medical Review Board to start leqembi. I'm a chocolatier and was so frustrated this season that I couldn't picture how I should arrange my set-ups for each stage of the process. I close my eyes and just can't conjure it up. I've taken to taking photos as I go along and hope I can succeed again next time. I would love to get my "mind's eye" back.
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Less likely to be a candidate. The infusions are for Mild Alzheimer's as my neurologist explained to me.
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Which is better? I think it’s too soon to say. Both treatments are relatively new. I think it will be take comparisons of outcomes after a few more years to tell.
DH here is on Kisunla. Kisunla was the one his neurologist recommended. Neurologist said, at the time of recommendation, that he didn’t see a difference in outcomes at that point. Just finished infusion #12 and waiting for PET scan.
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Hi Audrey,
I totally get the devastation of the loss of ones minds eye. I felt like I was like half blind without it. I don't think a person realizes how often and how varied ways it is utilized until it suddenly disappears. It only took, for me, between four and five Leqembi infusions for it to partially come back. I am guessing it is different for everyone depending on the extent, progression etc that has occurred. I still cannot remember crap, don't get me wrong. But the infusions appear to have helped bring a bit more clarity to some of the other parts of my brain functions. I am not sure if this makes sense. Like helped clear fog. Wishing a speedy approval process and only the best for your upcoming infusions. Hope you let us all know how it goes for you.
GE
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My DH is due for his 3rd infusion of Kisunla. We will see the doctor next month for his report. I almost feel the disease is progressing faster but what I’m reading here is that I need to be more patient and wait until he’s had more infusions?
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So many unanswered questions even after all the research we do. No long term study due to infusions being new. It's a safe bet for Lilly's, etc. as far as long term outcomes both positive or negative as so many people my age will be gone. I am 80. We have no way of knowing how much amyloid plaque is in so many other 80 yr. olds??
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As a reminder, the Phase 3 trials for both Kisunla & Leqembi (the two FDA-approved anti-amyloid medications) showed they successfully slowed cognitive decline compared to those on placebo. In addition, both drugs did a very good job of removing much (or all) of the amyloid plaque. For example, after 24 weeks of Kisunla infusions in the Phase 3 trial, about 30% of the people were amyloid-clear, with 66% clear at 52 weeks and 76% clear at 76 weeks.
In terms of age range, the participants in the Phase 3 trial for Kisunla were from 60-85. Some people develop very early AD, for others the issues don't occur until much later in life. That is the nature of the disease.
You expressed a concern about "long term studies". Last Thursday I posted a link to a Facebook post from the Alzheimer's Association about Ralph Carmona. He partcipated in one of the early trials with Leqembi and has continued on with treatments. In 2025 he ran in the Boston Marathon at age 75. I'd call that an example of a long-term success story.
I attended the Alzheimer's Association International Conference in Toronto last summer. Eisa (the drug company primarily responsible for Leqembi) presented data from people who were in the 18-month Phase 3 trial with Leqembi and continued on with treatment for a total of 4 years. They reported that among those in the trial who started on Leqembi with low amounts of tau (another dreaded particle found in the brain of those with AD), 69% had no cognitive decline after 4 years. These seemingly are very good results.
The question of the amyloid plaque level of an average person aged 80 may be academically interesting, but I'm not getting what that has to do with the price of tea in china (as my Dad used to say). The Phase 3 trials for Leqembi & Kisunla were exclusively for people diagnosed with AD. Specifically, people who took cognitive exams where the results showed a reduction in cognition and they had biomarker evidence of AD (i.e. an amyloid PET scan or a lumbar puncture to confirm high levels of amyloid plaque). Today, if somebody has low levels of amyloid plaque but significant cognitive decline, then they seem to have something other than AD and anti-amyloid medications wouldn't seem to offer much help.
Some people do have high levels of amyloid plaque but for unknown reasons never seem to suffer the cognitive decline associated with AD until perhaps later in life. Clinical trials with the two anti-amyloid medications are currently being conducted with people in this exact situation. These trials will determine if starting on anti-amyloid medication treatment early may actually prevent cognitive decline from ever occurring.0 -
Why did you cancel the infusions?
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If you don’t mind answering, why did you cancel the infusions? I am in the decision making process. Thank you.
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Please let us know the outcome of Pet Scan, etc. Kinsunla was recommended for me. I signed up but cancelled. To many unanswered questions. I was diagnosed 6 months ago after ALL testing including Pet Scan. I am 80, and have had 6 months of stress from the diagnosis plus 6 months of prolonging the infusions due to insurance approval. I am still taking care of all my finances, etc., and see very little, if any signs of progression. This is how I came to conclusion to cancel infusions. It seems by the time I complete the infusions now I would be close to 83. No one in my family of 7 sibblings have lived that long. It seems there is just to many unanswered questions even AFTER researching & learning for the past 6 months. I also had to consider how much of a BIG money maker this is for pharmaceuticals, Lillys, etc. It's a difficult and personal decision for sure.
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I support everyone's right to decide for themselves on whether or not to seek anti-amyloid treatment for AD. From my knothole, the risk vs reward parameters are clear and undisputed. The risks of anti-amyloid treatments are brain swelling and bleeding (referred to as ARIA). Most cases have no symptoms (i.e. people don't know they have ARIA until they receive an MRI), and the solution is to simply stop treatments and the ARIA goes away. But there are some cases of ARIA with symptoms, and sometimes the symptoms are severe.
The rewards are also clear and undisputed. Depending on your AD stage when you start the anti-amyloid treatment (as opposed to your calendar age), the drug can either stop cognitive decline (if you start with very low tau levels) or slow the cognitive decline associated with AD. Either way, people who choose to start infusions with an anti-amyloid drug are decding to purchase more quality time at a higher cognition level at the risk of ARIA.
It is not wise to base a decision on starting an anti-amyloid treatment on the current state of cognition. A hallmark of AD is an accelerating cognitive decline over time as the disease damages more and more of the neurons in the brain. The whole idea of starting the drug very early is trying to prevent the worst of the future cognitive decline. Only one thing is certain - without anti-amyloid treatment, the cognitive decline associated with AD will accelerate faster over time compared to someone who took anti-amyloid treatment.
The initial treatment periods with Kisunla / Leqembi are 18 months (as that was the length of the Phase 3 trials for both drugs). Kisunla offers the option of stopping treatment after amyloid clearance, which happened during the Phase 3 trials with Kisunla (30% of participants in the trial were amyloid-clear at 24 weeks, 66% at 52 weeks, and 76% at 76 weeks). To say this another way, any one person might have about a 1 in 3 chance of being amyloid clear after six Kisunla infuions over 24 weeks. It is easy now-a-days to check for amyloid clearance, a simple blood test will suffice (I recently had one of these blood tests, I'm amyloid clear from Leqembi infusions after 18 months of treatment).
I am not following what the income Eli Lilly derives from Kisunla has to do with a patient's decision to start on treatment. Kisunla underwent Phase 1, Phase 2, and Phase 3 clinical trials. Prior to that, there were studies with mice using Kisunla. The drug companies expand vast amounts of money funding these trials to develop new drugs. Many of the drugs do not make it to market, as the drug trials fail to show any benefit. So yes, Eli Lilly now is starting to make money from Kisunla sales, as the income from their Kisunla sales presumably exceeds the cost of manufacturing the drugs. However, it is not clear that Eli Lilly has yet recovered the cost of developing Kisunla in the first place. That will take time (years). But before that passes, Eli LIlly has newer AD drugs under development which hopefully will be more effective at amyloid removal with reduced side effects.
Eli Lilly is a publicly-traded company so anybody can look up their financial data on the web (I did this morning). In 2024, 75% of Lilly's income was from 6 drugs: Mounjaro, Verzenio, Trulicity, Zepbound, Jardiance, and Taltz. When they issue their 2025 financial report, I wouldn't expect Kisunla to be among the top 6 revenue sources for Lilly. Despite the relatively high cost of the drug for patients (compared to any other drugs they may be taking), there just are not yet huge throngs of people taking these drugs, so Lilly isn't reaping tons of income from the sales of Kisunla.0 -
Thank you so much for sharing your story. I can really relate. I don't think many others understand. Thank you.
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