Treatment with Lecanemab (Leqembi®)?

gsergenian

I have just been diagnosed with mild Alzheimer's dementia. My neurologist has suggested treatment with Leqembi. Please share anything you know about it from personal experience or from others you know who have used it.

Iris L.

Welcome gsergenian. I believe one member is receiving infusions. Perhaps he will see your post and respond. How are you doing?

Iris

Watson1

leqembi is expensive and what may be gained only only minimal in the course of things. side affects sound alarming. i have alzheimers an am on deoplozin (aracept) which is helping. research, research!!!!!

LindaOsw

I began leqembi on Sept 5. I have APOE 4 and was clearly informed of my increased risk of serious consequences because of this pair of genes. It was not a hard decision. Unfortunately just before my third infusion I experienced serious symptoms. I am much better now, but would not consider restarting the infusions nor would my neurologist administer them. I don’t regret embarking on that path and would be pleased to share details, but don’t want to give anyone more information than they’d like. To my surprise, I could feel an improvement in that short time. Not dramatic, but noticeable

As to the expense my insurance company after I had spoken to them directly, told me I would have no copayment. About 6 weeks after the first infusion, my Dr was notified that I owed $500 for each infusion. I had a lengthy discussion with my insurance company and understood that I would get a decision in 30 days. When I called back after realizing it had been more than 30 days I learned. That there was no appeal and that while it was true I had no copay, I did owe a coinsurance of $500 for each infusion. I didn’t have to make a decision because I had already stopped my infusions.

In spite of what my Dr called a very serious reaction, 3 days in the hospital, more monitoring MRI s and lingering headaches I feel it was worth trying.

If anyone has questions about my experience I will do my best to answer

Linda

LBC83

> @gsergenian said:
> I have just been diagnosed with mild Alzheimer's dementia. My neurologist has suggested treatment with Leqembi. Please share anything you know about it from personal experience or from others you know who have used it.
I just had my 12th infusion of Leqembi. Zippo side effects so far, today I ran 3 miles a few hours after my infusion. Before starting Leqembi, I studied the Phase 3 clinical trial results. I have one copy of the APOE4 gene, the study results indicate that 14% of people with this APOE4 gene type developed ARIA-H, and 11% ARIA-E. I deemed these odds reasonable to slow down the disease progression by 27%.

gsergenian

https://alzconnected.org/discussion/comment/228747#Comment_228747

Linda, I am interested in more information. I also have APOE 4 and am therefore at higher risk. Did you have brain leaks or bleeding? Thanks for any additional information.