Leqembi infusions

whytever · September 16

Hello. I'm new to the group. My husband was recently diagnosed with MCI due to AD, 66 yo. + APOE 4. Needless to say, we are devastated. He's had mild memory loss for about 6 months. Tried aricept but had terrible GI symptoms. He's been tolerating Namenda. I haven't noticed must improvement with his ST memory. However, Leqembi and Kisunla infusions have been offered. I've done alot of research and it appears that only about 9 months of improved memory has been gained. I've read numerous posts here about these infusions and while it seems that those who are using the infusions are doing well, there doesn't seem to be any posts as to whether it has helped with ST or LT memory gain. My husband is reluctant to do the infusions due to the potential of ARIA. Thank you for your feedback.

whytever · September 16

LBC83 · September 16

I just had my 33rd Leqembi infusion. Here is one data point: I had the Montreal Cognitive Assessment (MoCA) performed twice: a few months before starting on Leqembi and after about 10 months on Leqembi. I scored the same on both tests.

I'd suggest you aren't quite reading the study results correctly. Cognitive decline is a common characteristic of AD. In the respective Phase 3 clinical trials for Leqembi & Kisunla, they both slowed the cognitive decline by about the same percentage. Some folks have converted this percent slowing of cognitive decline into time, as that is seemingly easier for us common folk to understand.

Thus, in general, neither drug "helps with ST or LT memory gain." Rather, both drugs help slow ST/LT memory loss.

There is one exception. In the Phase 3 trials for both drugs, they did a subgroup analyses for those with no/low levels of tau in their brains. As a reminder, the two hallmarks of AD are amyloid plaques which exist outside of neurons and tau tangles which are inside neurons. It is the tau tangles which drive the cognitive decline associated with AD. Unfortunately, no anti-tau drugs are currently available (some are undergoing clinical trials right now). The two drugs that have been approved by the FDA (Leqembi & Kisunla), are anti-amyloid drugs.

Back to the no/low tau groups. For this subset, the drugs stopped cognitive decline in a significant fraction of this group, and a small fraction in this group actually did experience a slight improvement in cognition during the clinical trial.

Yes, ARIA is a concern with these drugs. I was well aware of the risk. Both of my parents had dementia. My Dad died quickly from cancer, but my Mom lingered on while AD slowly robbed her of all of her memories.

Thus, I was very aware of what it was like to experience this disease, so for me it was a simple decision to start on Leqembi (that was the only drug available at the time). I was also considering joining a clinical trial with an anti-amyloid drug and an ant-tau trug. But that trial was delayed, so I started on Leqembi.

I respect that others may make a different choice.

GEH · September 16

https://alzconnected.org/discussion/comment/253696#Comment_253696

Thank you so much for your informative discussion. I recently went to my first appointment at Barrows Neurological where I live. That appointment was scheduled a year ago. I am tentatively excited about BNs approach and they appear to have a pretty good score on my TGAF meter I carry in my purse. Lol. They scheduled me for both an MRI and PET scan. Looking for forward to hear what they have to say after being with a neurologist for three years since I was diagnosed that scored really really high on the IDGAF about you meter.

whytever · September 17

https://alzconnected.org/discussion/comment/253696#Comment_253696

Thanks so much for your response. Glad to hear you're maintaining cognitive function and tolerating the infusions. The MOCA comparative result was a good example for me to grasp. My husband's MOCA was 24/30, his pTau was .33 (range max .15) and "significant" amyloid plaque on PET scan. What is your age? Again, much appreciate your response.

LBC83 · September 17

https://alzconnected.org/discussion/comment/253779#Comment_253779

I'm 64.7 years old (I turn 65 in January 2026).

Leqembi infusions

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