Last Infusion and Encouraging PET Scan

Bobscape

Today I get my final Leqembi infusion, completing the course of 40. 

Last week,  I saw my neurologist to go over my final PET scan. It was negative. No detectable Amyloid plaque. Amazing. <Bob gives a big exhale.>

The doc offered options for maintenance. They were:

• Monthly infusions at the infusion center.
• Weekly self injections
• Blood test monitoring every six months. (I would resume the Leqembi if the blood test returned positive.)  

After a lot of discussion I elected the blood test monitoring, using a recently approved more accurate testing method. (Reminds me of PSA testing for prostate cancer.)

Here’s the PET result: AMYLOID PET SCAN performed at 3T radiology on 11/19/2025 : Amyloid NEGATIVE (centiloid 15.2)

I will continue my self-managed programs, including regular exercise, attempt at healthy eating, challenging my cognition with puzzles/games and social interactions. 

It’s a journey. I am very grateful for the Wien Alzheimer research center at Mount Sinai Miami. 

LBC83

https://alzconnected.org/discussion/74789/last-infusion-and-encouraging-pet-scan

I've had similar results. I just completed infusion #39 of Leqembi yesterday. Last week I had one of the new blood tests, my results also showed I was clear of amyloid plaque.

I'm electing to continue on with Leqembi maintenance dosing. My decision is based on the fact that Leqembi is dual-acting: it removes both amyloid plaque and amyloid protofibrils. The latter are smaller pieces of amyloid which group together to form amyloid plaque. By themselves, amyloid protofibrils are known to damage neurons.

It remains unclear as to whether I will switch to infusions every 4 weeks or go with the new IQLIK subcutaneous dosing weekly. I would prefer IQLIK, but I have my 65th birtday coming up in January and I'm in the process of enrolling in Medicare. It may not be so easy to switch from infusions to IQLIK concurrent with switching over to Medicare.

Susansan

Hello LBC83 & Bobscape, I'm wondering how you feel subjectively after all this Leqembi treatment? Does being clear of amyloid plaque result in keeping the quality of life and sense of keeping the cognitive level you had at the start of your treatment? Do you feel your Alzheimer's journey has been stalled insofar as your everyday life?

My husband & I are trying to make a decision if Leqembi is the path for him.

Thanks!

LBC83

There are two key elements in the biology of AD: amyloid plaque and tau tangles. Anti-amyloid medications (Kisunla & Leqembi) do a very good job of removing amyloid, but don't effect tau levels much. Unfortunately, it seems that tau is a key driver in the cognitive decline associated with AD.

In substudies within the Phase 3 trials with Leqembi & Kisunla, they found that for those who started on the medication when they had low tau levels, the drugs did a great job at maintain the "quality of life" and "the cognitive level you had at the start of treatment." However, if you start on the drugs with higher tau levels, the drugs still remove amyloid plaque, but they only slow the cognitive decline.

So the results with Leqembi/Kisunla seem to vary, depending on how early in the progression of AD the drugs are started (with starting the drugs earlier resulting in better results).

For me, it was a simple decision to start on Leqembi (the only available drug at the time of my diagnosis). I read the Phase 3 report and was aware of the risks of ARIA. But I had personal experience with this disease, with both my parents having dementia. I was willing to take a moderate risk to try to buy more quality time in my life.

I respect that others may chose to forgo treatment and "let nature take its course".

GEH

https://alzconnected.org/discussion/74789/last-infusion-and-encouraging-pet-scan

Congratulations 🎉🎉🎉

Michele P

https://alzconnected.org/discussion/74789/last-infusion-and-encouraging-pet-scan

Look into Brain HQ online brain training games. It is used by the Mayo Habit Program. It gave my husband back lost cognitive functions. We suspect it is building new neurons in the undamaged parts of his brain. Also look into Dr. Dean Ornish Lifestyle Program. He has clinical trials that slowed the progression of early stage Alzheimer’s patients and in some cases allowed them to regain lost cognitive function. You are on the right track. Look into foods that go through the brain barrier to build new cells in the brain. They are working on new drugs to break through the brain barrier for Alzheimer’s. Best of luck!

Pennyeick

I am taking Lequembi infusions and have been for about two years. I am still quite forgetful. I also have pain in my body. I am not sure this really helps.

LBC83

https://alzconnected.org/discussion/comment/260489#Comment_260489

Leqembi (and Kisunla) are not cures for AD. Rather, the clinical trials showed they slowed the progression of cognitive decline. So the question would be, if you had not started on Leqembi, what sort of cognitive decline would you have experienced with the natural progression of AD, compared to the cognitive decline you actually experienced. I don't know how any human being could make such a determination (i.e. how would anybody be able to predict how they would have declined "naturally" and compare that to their actual decline).

I had a quick cognitive assessment before starting on Leqembi, and a second about 10 months later. I scored the same on the 2nd test. I take that as a success with Leqembi.