Kisunla for homozygous patients

SK77 · July 4

First let me say how grateful I am for all the people here sharing there very personal journeys with this insidious disease. Having browsed the the discussions as a non-member, I can see the fear and confusion, along with the empathy and desire to help. I am having trouble finding any personal experiences with people using Kisunla while having the two e4 zygotes.

My wife was diagnosed in December of 2024 with MCI by a gerontologist and went on Donepezil. In December of 2025, the diagnosis was upgraded to Mild Dementia due to Alzheimer's disease. This was based on the typical process of elimination, family history and P-tau blood test. In March of 2026, we saw a neurologist, who did further testing, including genetic testing (revealing two e4's) and ordered a PET scan that confirmed plaque accumulation. He suggested, as a treatment option, an anti-amyloid treatment, such as Leqembi or Kisunla. He indicated, however, that her current BOCA score was too low to consider Leqembi, leaving Kisunla as our only option. He fully explained the ARIA risks and what his professional experiences have been with it, including those with the two e4's. They were somewhat encouraging, but the sampling was very small (2).

I was hoping to find more personal experiences on this site in order to help make this agonizing decision of taking a significant risk that could actually reduce quality of life in order to hopefully hold on to some normalcy for a bit longer.

We would be very grateful if anyone on this forum, who is using Kisunla with the two e4 zygotes would share their thoughts and experiences or possibly offer some further guidance.

Dusty217 · July 4

My DH only has one E4. Doing Laqembi and doing fine Neg Aria after 3 MRI's. Sorry can't help more.

SK77 · July 5

https://alzconnected.org/discussion/comment/276546#Comment_276546

Thank you so much for your response. So glad to hear that he is doing well and wish you continued success with his treatments.

Rene' LeBlanc · September 6

Hi, I am new to this forum but read your post with interest as my husband also has two APOE4 genes. My husband's neurologist has indicated that he will not treat any patient with two APOE4s with Kisulna. I'm scheduling a follow up with him this coming week to confirm this and examine the exact risks in doing the treatment for my DH as we too don't want to further disable him (or worse) in an attempt to stop the progession of Alzheimers in him. Could you share the studies you've looked at for APOE4s, even though they have small treatment groups?

Dusty217 · September 6

https://alzconnected.org/discussion/comment/276627#Comment_276627

Just to add 2 above, on the 4th MRI my loved one with only 1 APO4 gene showed ARIA. He is currently on hold for treatment. No symptoms but they will do MRI's monthly until improved or gone. So that's where it stands for us at this point. His Symptoms of AD have not progressed at this point.

Rene' LeBlanc · September 7

Thanks for sharing Dusty217 as it helps inform our decision—especially in light of the fact that your loved one had only 1 APOE4. Regardless, I'm glad that he showing no symptoms now!

SK77 · September 20

https://alzconnected.org/discussion/comment/281770#Comment_281770

https://alzconnected.org/discussion/comment/281673#Comment_281673

When we went to the neurologist's office to further discuss Kisunla treatment (and possibly enroll) we were left with an uneasy feeling. The doctor said that until very recently, he would not accept patients with the 2 ApoE4's. They recently accepted two. At least one had developed asymptomatic ARIA. Wouldn't share much more than that with us. Ended up seeking a second opinion from the Cleveland Clinic. He seemed to think that the risks of severe damage were not huge, but questioned the efficacy for homozygotes. (This is apparently a hotly debated subject with no definitive answers, largely due to the small sampling.) He felt that the current data available was inconclusive. Paraphrasing what we were told, he said that if you wanted to feel as though you had tried every thing possible to delay progression, Kisunla would be appropriate, but he didn't think we would be missing out on much benefit if we decided against it. Unless things have changed very recently, Kisunla is apparently not approved for use in Europe for patients with 2 APOE4 zygotes.

I'm afraid I didn't save the url addresses of many of the studies I have read. I can tell you that there is a great deal of info on the Eli Lilly website and the NIH website, but very little breaks out the 2 ApoE4 group in their data. There is also a website called ApoE4.info that has a forum and many articles regarding how this genetic make up affects Alzheimer's and other conditions. since only 2% of the population has this genetic make up, apparently, it is not considered statistically significant.

We are proceeding on the basis of: Whatever efficacy figures we read about results for the general population, ours will be worse. And whatever safety figures we read, ours will be worse. Wish we could apply numbers to that.

Wish I could be more helpful but just thought that I would share our experience with you. Good luck in your decision and in this journey that we have begun.

Kisunla for homozygous patients

Comments

Commonly Used Abbreviations

Community Guidelines

Categories