Kinsula treatment

James Paul

Is anyone in this group being treated with Kinsula? If yes what has been your experience. I would like to know more about it before making a decision to start treatment.

LBC83

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.

Deerdance

https://alzconnected.org/discussion/72692/kinsula-treatment

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.

LBC83

https://alzconnected.org/discussion/comment/243531#Comment_243531

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.

Cappy88

In order to get on this medication, do you need to be part of a trial? If not, is it expensive?

lfaust58

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.

LBC83

https://alzconnected.org/discussion/comment/244310#Comment_244310

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.

Cappy88

https://alzconnected.org/discussion/comment/244398#Comment_244398

Thank you for the information.