Kisunla Treatment

@Frankski

Hi and welcome. I am sorry for your reason to be here but glad you found this place.

You have posted on the least visited discussion board on this site.

I would suggest reposting this question on the "I Am a Caregiver (General Topics) and the "I am Living with Alzheimer's (Dementia)" boards.

Welcome to ALZConnected!

HB

Hello. I just joined this forum today and look forward to communicating with others dealing with early Alzheimer’s.

I started Kisunla Monday and have had very few side effects. The first two nights, I experienced headaches which went away once I took Tylenol.

I am struggling to accept the diagnosis of MCI due to Alzheimer’s. Most of the time I am absolutely fine. I do find myself struggling to recall events from earlier in the day or the day before, but upon prompting they come back to me. I’ve had a few episodes of disorientation. My friends of the same age (65), have a very hard time believing that I am experiencing anything more than normal aging. It is very difficult to explain and has made it harder for me to process.

I reported symptoms of tremors in April and went to the neurologist who tested me for Parkinson’s. The Parkinson’s tests came back negative, however during the diagnosing ,questions came up about my cognitive function. I told them that I was having issues and that they were of concern.

I first had bloodwork to test for bio markers for Alzheimer’s,. This tests came back (very) positive for Amyloid and Tau. I was told that the results could be similar to having high cholesterol, but not having a heart attack and that I had to have a PET scan. I was very nervous because of the results of the bloodwork.

The PET scan came back negative. My neurologist questioned the results and asked him to have another look. The same radiologist came back and said oops it is positive. Then, I had another Pet scan the 15th of October, through different imaging company, using a different medication. That test came back “clearly” positive. I therefore have little defense in believing that I do not have Alzheimer’s. It is a very tough to process, especially given how mentally sharp I feel most of the time. My symptoms are sporadic but hard to deny.

I decided to start the Kisunla because I was told I am in the early stages of symptomatic Alzheimer’s. My fear is that if I waited, I would not be approved for the medication, in the event that my condition progressed. It was a very difficult decision to make, but I am very hopeful that this will delay the of my disease. Before I started the treatments last week, I had a very bad day that I could not piece events together. I also left eggs boiling on the stove for hour and a half. Friends told me that they have also done that, so I questioned if that was normal. The thing that was most disturbing to me was that I could not recall at what point during the day this occurred.

I believe it was a signal for me to trust the neurologists so I started the Kisunla, which by the way Medicare paid for.

I look forward to hearing other people‘s thoughts, as this has been very difficult for me to grasp, as I’m sure it has been for many especially in the early stages of Alzheimer’s

Jack do you have access to a support group? My wife and I attend one online through Duke in NC. You don’t have to be a patient at Duke to join. The flier lists 2024 dates but we are meeting now in 2025. Feel free to contact me directly if you have questions.

https://dukefamilysupport.org/files/2024/02/YOSG-2024-corrected.pdf

Hello Jack16, you wrote this in November, can we get get an update as to how it's been going on Kisunla? My husband is a candidate but we are both concerned about the side effects, especially ARIA. How did your MRI's go? Thank you! Justine.

Hi Zimbalatti

I'm South Dakota Dave using Leqembi, not Jack 16 who used Kisunla. I know this site can be a little hard to follow when new, I had to spend some time figuring out too.

I am available to answer any questions. I have had 31 Leqembi infusions (every other week starting January 2024). I am unsure of my current condition, but I will get more accurate results from a PET scan at Mayo Clinic, MN in August 2025.

My first infusion was challenging, but the symptoms subsided the next day. The infusion rate was slowed to 2 hours instead of 1 hour; Tylenol, Claritin, and sometimes warm clothing helped. After these adjustments, there were no more issues with infusions.

I expect to continue every other infusion until my 18 month point which generally rolls into every month infusions and will also likely have an at-home infusion device which saves time, travel and money (both changes do need FDA approval, likely in August).

Recently, the FDA also announced that Leqembi removed 26% more amyloid than Kisunla. Leqembi began an FDA trial for the anti-tau drug E2814 in combination with Leqembi, potentially suitable for at-home injections. We anticipate that Kisunla can achieve similar outcomes, as it is crucial to eradicate this disease.