Kisunla

bettygmadison · July 29

Good day to all. I'm looking for feedback on with Kisunla, how treatments went, results, etc. Thanks in advance

LBC83 · August 4

Unfortunately, it seems that those of us on an anti-amyloid drug (I'm on Leqembi) are generaly not participating in AlzConnected, as evidenced by the lack of replies to your comment. I'm involved in other internet forums where there is much more active participation by people currently taking Kisunla & Leqembi. In general, some have side effects such as headaches and nausea from the infusions with either drug. Generally, for those who stick with it, the side effects go away after several infusions. I have had zero side effects. Today I had my 30th infusion of Leqembi, and I feel perfectly normal, just as I have felt after every infusion so far. I'm planning to go run on a treadmill for 4 miles later today, then swim some laps.

In terms of results, the phase 3 trials for the two anti-amyloid drugs on the market demonstrated a slowing of cognitive decline compared to those on placebo. My trite reply to queries about effectivity of the drug is that it isn't particularly easy to perform a self-assessment of cognitive decline. Even if one could easily perform a cognitive self-assessment, how would one determine the state of one's cognition had one not started on the drug, to determine if the drug has been effective? With that caveat, my Neurologist performed a quicky cognitive test about a year after I started on Leqembi, and I scored the same as shortly before I started on Leqembi. I declare that a success.

Jeannie2211 · November 15

Can You recommend other internet forums? I'm interested in connecting with others who are taking Kisulna. Thanks!

LBC83 · November 15

https://alzconnected.org/discussion/comment/258535#Comment_258535

If you search Facebook for "Kisunla", you will find a public group with 1,400 members and a private group with 900 members. The difference is that anybody can join/view a public group, while individuals must request joining a private group and non-members of private groups can't see the contents of the group. I participate in the private group, I don't follow the public group. Note that both of these are support groups for anti-amyloid medications in general, so they cover both Kisunla and Leqembi. The logic is that the side effects (i.e. brain bleeding / swelling, referred to as ARIA) are the same, and the treatment outcome (reduced amyloid plaque, slowing of the progression of the disease) are the same, and both are currently given via infusions. There are some differences, we can get into that topic if you are interested.

Dorse · November 15

Thanks for sharing

JJ401 · November 15

Just saw this. DH here just had month 9 of Kisunla. So far no adverse reactions, no side effects. For the first few months infusion took about an hour as he had to be stay to be monitored. Now they let him go as soon as the infusion is over, so about a half hour.