Tests indicate Alzheimer's: Any thoughts on Leqembi and Kisunla?

After similar testing, my husband did three months of Lequembi infusions last year before he decided to quit. He had no ill effects from the infusions, but he felt the risks from regular MRIs to detect possible brain bleeds wasn't worth the possible 3-4 months that might slow the progression of the disease. He is 79 now, with moderate dementia.

My husband went on Lequembe in August 2025. He's had 10 infusions so far and 4 MRI's during the process. He's not scheduled for the next MRI until the 15th lequembe infusion I think. His infusions go up to 18 and then he sees the doctors, has more tests, and then goes on Maintenance, once a month infusions. To date, he hasn't had any brain swelling and/or brain bleeding, and seems to be okay. He was tired at first, but has acclimated to it.

I know one person (a female) who was having the infusions, had some difficulty, so they slowed her drip down to be over an hour. I don't have the details, but I just remember being in the doctor's office when this happened. My husband's treatment is every two weeks one hour treatments, and is part of First Infusion (Guide) who then follows up after his infusion. They have a nurse as part of GUIDE, that answers any questions and/or problems you have. That Guide, is part of the doctor's practice and is Medicare covered.
As for whether I notice any difference, my husband has mild cognitive impairment. He's forgetful, has challenges at times keeping up with a confusion and/or putting a solution to something, but he's still functioning. Knock on wood, but he seems to be doing a bit better with losing things, as he puts everything in one place now as part of his process. Hope this helps.

My husband also has MCI due to Alzheimers and he is 68. We are in the process of starting Kisunla. I'm also interested in and appreciative of input from anyone going through with infusion treatments, especially Kisunla. Thank you!

@paul55, I hope you saw the helpful replies your received from fellow members. I'm sure both you are your wife are upset, nervous, scared by the results of the testing.

You may appreciate this article:
- How do I decide between Leqembi and Kisunla? https://www.drugs.com/medical-answers/how-decide-between-leqembi-kisunla-3578170/

Was it decided to start on medication? Which one: Leqembi (lecanemab-irmb) or Kisunla (donanemab-azbt) How are you both doing?

Colleen, thanks very much for support. I appreciate it. Here is an update. My wife had a 2-3 hour neuropsychological test, which confirmed the shorter one and the other findings. They also drew blood to do genetic testing. She definitely has mild cognitive impairment/Alzheimer’s Disease. The neuropsychologist meet with us afterward and was very helpful and supportive. She discussed possible infusion treatments, and I though was suggesting Leqembi. We met with the actual neurologist who is a specialist in this area along with two others. She confirmed the diagnosis, and is recommending Kisunla, which was a little confusing, but I guess that is the recommendation. The genetic findings were not in at that time, but she is recommending infusion treatment unless the genetic test excludes her. She said our next appointment would not be for 8 months, which I found disappointing, as that seems to indicate that other than the infusion treatment, there is really nothing to be done.
A few days later we saw the genetic testing result on mychart. My wife has APO alleles e3/e4. The doctor said e4/e4 is not eligible for infusion treatment, I think because the risk of brain bleed or brain swelling is too great. I think the risk is less for e3/e4 but still higher risk than normal e3/e3 or others. Waiting to hear from her about whether she now recommends infusion treatment. she explained that the infusions get rid of the amyloids in her brain, but does not make things better—it is hoped the infusions slow down further decline.
Regarding infusion treatment, my wife, and I have mixed feelings about it. Our understanding is that after the 18 months with an infusion a month, it only lessens decline for 6-12 months. After that, she will be at the same place someone who did not get the infusions is at. On the other hand, I suppose an extra 6-12 months putting the worst off will seem like a big deal when it happens. We have not decided on whether to do the infusions even if she is eligible. At first I think my wife was against it, now I am not sure. We have a very active live, trying to go on overseas trips twice a year and spend a month in Palm Desert every January and one or two other trips within the U.S. each year, including a week on the North Shore in Minnesota with our daughers and their families in the summer. Have been doing so for about 5 years now, and now facing the possibility of not being able to do so in the not distant future.
Lastly, we are in the process of making an appointment to consult with a doctor at Mayo Rochester to get a second opinion but really to see if the treatment process there is more postive, or gives more hope, or perhaps allows for participation in trials for newer treatment methods, pills, infusions or otherwise.
Of course the doctor would not be tied down regarding timing of decline to the point where my wife will not help on normal day to day care. But it seemed like she was saying it likely to be within the next 5-10 years. That hit us hard.
I would appreciate. your thoughts, suggestions or support regarding all this. Thank you!

We are now in process to set up Kisunla treatments for my husband. A few reasons for Kisunla for us:
*It's once a month infusion vs. Leqembi is every 2 weeks; Kisunla is less time and inconvenience
*There is an MRI after every infusion to check for ARIA so once a month is better than twice a month
*According to what I've read, if Kisunla successfully clears away the plaques, you can stop the treatment before the 18 months. Leqembi I believe you have to do the entire 18 month treatment regardless.
*My dad died of Alzheimers 20 years ago so I've seen this road up close. If we can get a day, a week, a month or a year more of my husband being stable and "with us", my husband and family think it's worth the risks.
*I believe the ARIA risks are managed well and if anything is found, treatments are stopped immediately. Other than that, most side effects are somewhat mild from what I've read (some headache, nausea, etc.).
*If the treatments are not tolerated well, we can stop any time.
*5 years ago, there were no treatment options at all for AD/Dementia. We have two amazing options now that are only available in the early/mild stages. Once you move out of the early/mild stage, there are no options. For us, why not take the ONLY treatment option available? Otherwise, there is nothing anyone can do to prevent the decline from happening.

It's a difficult choice for each person and family. God bless everyone going through this. May you find wisdom and clarity, peace and comfort.

@paul55
I read your post with great interest. My husband has been offered Lequembi infusions, and we are not sure what to do. Was not aware of Kisunla, but will look into it. I feel my husband was leaning toward going forward with further testing to see if he would benefit from Lequembi, but it has been a few days since we spoke with the neurologist, and he’s not mentioned it again. I’m sure it is because he’s forgotten, but that means if I bring it up, will it seem to him like I’m pushing for it? I feel it should be mainly his decision (with guidance from his doctors, of course). YOu are fortunate to be near Mayo Clinic! Best wishes to you

@jillemckeon
Your post and the one above are the first times I’ve heard of Kisunla. I will be calling Neurology today to learn more! Thank you for sharing your experience and your thoughts! This sounds to me, a little better than the 18-months of Lequembi.

@jillemckeon
Thanks for your input. Very helpful. I hope the best for you and your husband.

@2me
It’s a difficult process and I’m sure we are all doing the best we can. Thanks for your input and hope for the best for you and your husband.