Do I stop treatment if my Centeloid score goes down??

I also forgot to mention that teh amoyloid will build up very slowly I am told (about 3/yr)

should I tell my family and friends about my recent diagnosis of Alzheimer’s dementia? I would like to hear from you on this subject. Thank you in advance.

I'm also taking Donepezil once daily, and agree with GEH on this. It seems to "clear the fog". Of course, it follows that I have less confusion, and more clarity and motivation.

Larry

I am glad that several of you are seeing the benefit of Donepezil. Like so many medications, it helps some and others don't see a benefit. I will say that my DH has been on it 14 years. His description is "my head isn't in such a deep fog."

eagle

I love reading commements from you. They are so full of facts, specific details and lots and lots and lots of detailed specific information. I always learn something from you when you contribute to any conversation. Much thanks always for your contributions.

I'm part of a Facebook support group for those on Leqembi or Kisunla. Some individuals on Kisunla have done as you suggested: after amyloid clearance with Kisunla, they switch to Leqembi for maintenance dosing. Today, there are two delivery options for Leqembi maintenance dosing. I'm receiving Leqembi maintenance dosing via infusions every 4 weeks. The other option currently available is a weekly injection with IQLIK (their term for the device that delivers a subcutaneous injection of Leqembi into the fatty tissue below your skin). As you note, the concept is that Leqembi is dual-acting, removing both amyloid plaque and amyloid protofibrils (whereas Kisunla is single-acting, removing only amyloid plaque). Amyloid protofibrils are thought to also cause damage to neurons, hence the rationale for Leqembi maintenance dosing (to remove the continually forming amyloid protofibrils). I had an option to switch from infusions to IQLIK for maintenance dosing. With my medical insurance (Medicare + Blue Cross Blue Shield supplemental), infusion maintenance dosing have zero co-pay. I received a quote from Blue Cross Blue Shield for a co-pay of $711.95 for a 28-day supply of IQLIK. I'm cheap, so I elected to wtick with IQLIK for now. It is my understanding that Eisa (the company that developed Leqembi & IQLIK) got Medicare approval for IQLIK late in 2025, such that many (most?) insurance companies have large co-pays for IQLIK in 2026. I'm hoping that 2027 will be a 'normal' year, with Medicare / Blue Cross covering IQLIK just like they cover the infusions.

The August date you referenced is the anticipated FDA action date on a request by Eisai for approval of IQLIK for initial dosing of Leqembi. This means that very shortly, newly-diagnosed patients may have the option of starting Leqembi using IQLIK (i.e. zero infusions!). I presume that patients currently receiving infusions during the initial treatment period with Leqembi may also consider switching from infusions to IQLIK. However, they may fall into the same situation that I did, with higher costs for the IQLIK compared to the infusion.

For those really into the details, the IQLIK for maintenance dosing uses a smaller amount of the active drug, compared with IQLIK for initial dosing.

The Facebook group is called "Leqembi and Kisunla Support Group". It is a private group, you have to request membership. The two questions are highly complex: click the appropriate box indicating why you wish to join, and check a box indicating that you will abide by the group rules. You would be surprised at how many people fail to address both questions (resulting in denial of their request to join the group).

At one time I joined a public support group. But I found that many people posed non-scientific mumbo-jumbo (i.e. 'I saw an article indicating people should take **** to cure their AD!!!'). I grew weary of such nonsence, and joined the private group, which I found has very sane people who actually are on either of the two drugs (or their care partners).

Hi. My name is Dana 66 and im also new to this group.

I have been taking Memantine and Donepezel.

The Donepezel is great....no problems. But I just started taking Memantine twice a day.

I have been taking 1 a day and all was fine. But when I took the second that I was prescribed it made me sooo tired. I was working and it was tuff.

Will I get used to it if I keep taking it?

I’ve just completed my 7th infusion of Kisunla, I will have my 8th before seeing my Neurologist in August. Hopefully by then I will get updated information on its effectiveness. Chose Kisunla over Liqumbe after speaking with him and researching. Seems plaque can return but it seems to take 20 years, I feel I can live with that as it puts me beyond the life span of my parents and their siblings.

i was diagnosed with MCI and with biomarkers for AD about 1 1/2 years ago and have been taking donepezil for the last several months. It's not a cure, nor does it slow progression. But it can be helpful with symptoms. Is it doing me any good? The only thing I know is that neuro testing a couple of months ago showed to decline from the a year previous to that. In the meantime, I haven't experienced any significant side effects. So I keep taking it.

I would have to agree... i personally would only give the basic of info and allow them to take that in and ask questions if they twant. They may not want to at first, but may come back to you later with some.

My Hubby is on Donezepil and it has reduced his anxiety and stress. He has not had the GI side effects. It's a med that helps symptoms but not any affect on progression of the disease.