Kinsula treatment

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You might want to consider joining the closed Facebook group "Leqembi and Kisunla Support Group". There are people taking both drugs in the group. Over time, we have compiled our own document which compares / contrasts Leqembi & Kisunla in great detail, from a patient perspective. It is "closed" FB group as it requires answering some questions about why you want to join (to prevent scammers from participating).
I'm on Leqembi, the other anti-amyloid medication approved by the FDA. I have had zippo reactions to the drug or to the infusions themselves.
Both drugs seem to have very similar results in terms of amyloid removal, and generally similar outcomes for reducing the cognitive decline associated with AD. The current dosing strategy for Kisunla results in slightly higher ARIA rates compared to Leqembi (Amyloid-Related Imaging Anomalies, in simple terms, bleeding and swelling in the brain). However, Eli Lily (drug company that developed Kisunla) recently completed testing showing that modifying the dosing strategy (slowing increasing the number of vials over the first few treatments) resulted in significant reductions in ARIA. One presumes that dosing modification could be quickly approved by the FDA, resulting in new patients on Kisunla soon using the new initial dosing strategy.
The other big differences are that infusions are bi-weekly for Leqembi and monthly for Kisunla, and the duration of treatment. Kisunla treatment lasts until the amyloid plaque has been removed, as determined by PET scans. The drug manufacturer for Leqembi recommends continuing treatment. Specifically for Leqembi, after the initial 18 months of bi-weekly dosing, the recommendation is to continue a maintenance dosing at a once a month interval. The rationale is twofold. First, Eisai (drug company primarily responsible for Leqembi) has published data showing the rebound effect if the drug is terminated, meaning that the amyloid begins to reaccumulate in the brain. Second, Eisai likes to note that Leqembi is dual-acting: targeting both amyloid plaque and "highly toxic amyloid protofibrils" (to use the Eisai term). Eisai notes the protofibrils contribute to neurodegeneration. This is distinct from Kisunla, which only targets amyloid plaque. It is unclear to non-professionals (like me) how important amyloid protofibrils are in the grand scheme of AD. I'm just reporting the facts.0 -
I am considering it but it is difficult to know even when to start. I am on Aricept and although I don't like the side effects, I think it is helping. I inherited one copy of the APOE-e4 gene so that makes these infusions slightly more risky. My understanding is that the first 6 visits are longer because of the need to be monitored closely in the beginning. We still travel about twice a year so I need to look at my calendar to be sure I am near good medical care.
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Like you, I am a heterozygote for APOE4 (the technical term for having one e4 allele and the other allele something different, homozygotes have both e4 alleles).
For me, the question of when to start (again, I'm on Leqembi) was ASAP. In the Phase 3 clinical trials for Kisunla & Leqembi, the best performance was for those who started on the drugs early in the process, when the tau levels were low. For these people, a high percentage had no cognitive decline over the treatment period. This is in contrast with people later in the AD disease progression with higher tau levels - in these cases, the drugs tended to only slow the cognitive decline. But I presume that the earlier these anti-amylod meds are started, the better.0 -
In order to get on this medication, do you need to be part of a trial? If not, is it expensive?
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Well, first of all, did your Dr. prescribe Kinsula for you? If so, joining a trial is one possibilty- there may be some risks, so do your research. Your Dr. should help you with the process. In my case, after my Dx, my Dr. advised me to look into both Kinsula and Lequimbi. Either infusion medication was extremely expensive. I have Medicare which covered about 80% of the cost of infusion medications. For the remainder, I found the Lequmbi co-pay assistance program much easier to navigate (their website pretty much walks you through the process). then dicussed my choice with him. I chose Lequmbi. He then told me to choose an infusion center nearby me. The infusion center took over coordinating the every 2 week appointments and the Dr. prescribed the periodic MRIs. Sorry for the long post and TMI. Of course, your mileage may differ.
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To receive Kisunla or Leqembi, you simply need a Doctor's prescription. Both drugs have been fully approved by the FDA. There is no need to be part of any clinical trial to receive either of these drugs.
lfaust58 addressed the cost portion of your question. The price for Leqembi often quoted on the web is $26,000 for one year's worth of infusions. That is the cost for the drug itself, the cost of the infusion is separate. As noted by lfaust58, both drug manufacturers offer patient support programs for those who cannot afford to pay full price. My out-of-pocket costs for Leqembi (including the cost of the infusion) is $295 per infusion, which is every two weeks.0 -
Thank you for the information.
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My husband was diagnosed in December 2024. He had various blood tests, an MRI and PET scan to determine if he would be a good candidate for the Kisunla treatment. The results came back that he would be a good candidate. He has had two treatments (June and July 2025). After two injections, no known side effects. For us, the potential benefits outweigh the known risks of this disease's progression. I suggest you do your own research on the pros and cons. My husband is still taking two other drugs (Aricept and Memantine) which he started in January.
In six months, the neurologist will compare the MRIs to determine if there is a reduction in the Amyloid Plaque. Lilly requires regular MRIs to be taken before treatments.
We are praying that we will fall in the 61% of patients who see a reduction in the Amyloid Plaque within six months. Check out Lilly's website if you haven't already done so.
https://kisunla.lilly.com/hcp/efficacy?gad_source=1&gad_campaignid=21021503476&gbraid=0AAAAApMkgam235xZJR_XaiG2jac58yve6&gclid=Cj0KCQjwm93DBhD_ARIsADR_DjGvC0o0APrreUSq_JW_XzIEX3FFf4E7B43cUcHEwj5zjr2V7SxvNiwaAqGnEALw_wcB#keysecondaryendpoints
KISUNLA DEMONSTRATED REDUCTION IN AMYLOID PLAQUES AS EARLY AS 6 MONTHS1,10
Amyloid Plaque Reduction From Baseline in the Overall Population in TRAILBLAZER-ALZ 21,10
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Regarding your comment that you hope you are in the group with a reduction in amyloid plaque, you are incorrectly interpreting the Kisunla data. It is not as if 61% of the people on Kisunla experience a reduction in amyloid plaque in 6 months while 39% do not experience a reduction.
Rather, the percentages are the average AMOUNT of amyloid plaque reduction versus time. Thus, after 6 months of treatment, the average Jane/Joe receiving Kisunla had 61% less amyloid plaque compared to what they had at the start of the treatment. At 12 months, an average 80% reduction in the amount of amyloid plaque, and 84% reduction in 18 months.
Those numbers are for the overall population of those on Kisunla in the Phase 3 trial. For those on Kisunla in the Phase 3 trial with low/medium levels of tau, they had slightly larger reductions in amyloid plaque.0 -
One other comment about the post from NewBeginning, the paragraph "In six months, the neurologist will compare the MRIs to determine if there is a reduction in the Amyloid Plaque. Lilly requires regular MRIs to be taken before treatments."
Methinks there is some confusion about MRIs and amyloid plaque.
The standard procedures for both Kisunla & Leqembi (the two FDA-approved anti-amyloid medications), are described in two papers with the title "Appropriate Use Recommendations" (AURs) for each drug. The AURs for Kisunla indicate the following regarding MRIs:
A pre-treament MRI should be obtained no more than 12 months prior to starting treatment. If the MRI shows a certain level of cerebral microbleeds, cortical superficial siderosis, or a major vascular contribution to cognitive impairment, then the recommendation is that the patients be excluded from treatment.
Then, after starting treatment with Kisunla, surveillance MRIs are recommended to evaluate for ARIA (Amyloid-Related Imaging Anomaly, think brain bleeding and/or swelling). Specifically for Kisunla, the recommendation is for surveillance MRIs prior to the 2nd, 3rd, 4th, and 7th infusion, with another MRI prior to the 12th dose for those deemed higher risk individuals.
These MRIs provide no information about the quantity of amyloid plaque in the brain. Rather, an amyloid PET is needed (or a lumbar puncture, or the brand-new blood test) to quantify the amyloid clearance. The amyloid PET screening typically occurs 12-18 months after initiating treatment, according to the Kisunla AURs.
Eli Lilly doesn't "require" anything, they just manufacture the drug and make it available to Doctors. Lilly does provide recommendations on how the drug sould be used, as noted on their website. Similarly, the published "Appropropriate Use Recommendations" for Kisunla are just that: Recommendations developed by a team of experts in the field (and not affiliated with Eli Lilly). Neurologist are free to follow the AURs or Eli Lilly's guidelines, or "do their own thing". My sense is that Doctors are by their nature a conservative group, and I'd guess they would tend to following the suggestions published by the experts.0 -
DH has Kisunla infusion #7 at the end if the month. So far no adverse affects. Is it helping? I don't expect a miracle recovery. He's not any worse, and if that is all it does, that is fine.
Cost. He has Medicare and a supplement (not an Advantage plan). All costs fully covered so far.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
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POA = Power of Attorney
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