Leqembi Feedback

bhickfang

Recently diagnosed with Alzheimers. Have just been approved to begin Leqembi infusions and will start within next week or two. Would love to hear feedback from those on this therapy. Thanks!

lfaust58

https://alzconnected.org/discussion/73666/leqembi-feedback

Was diagnosed with AD in late Jan and just had my 11th Lequmbi infusion. Everything is going well and I feel pretty good. Only real bad side effects were after the 1st one unsteadiness, trouble getting into/out of bed, etc. Only diarrhea since then. If med. cost is a concern, I highly recommend the Eiasi copay program. The Lequmbi website leads you thru the process. The infusions are about an hour each every 2 weeks. Now the disappointing part (which I'm sure you already know): it's not a cure. It only slows the progression. But, it'll make you feel like it is. I have days at a time that I feel so good that I can't even believe I have AD at all. Let me know if you need more advice.

bhickfang

https://alzconnected.org/discussion/comment/249584#Comment_249584

Thank you so much!

Dorse

Dorse

Can anyone share any information on how the progression went for them with alzheimer's. I have been recently diagnosed with Alzheimers. I am doing well now, but do not know what to expect.

LBC83

I just had Leqembi infusion #40. I have had zero reactions to the infusions. I walk out of the infusion center feeling exactly the same as walking into the infusion center. Well, perhaps I have a little less anxiety walking out then when walking in, as I don't like needles very much :)

This isn't to say I wasn't nervous for my 1st infusion. I was what my Dad would call a "Nervous Nellie", sending text messages to family/friends every 15 minutes, performing a self-scan of my body for any symptoms of infusion-related reactions, watching the slow drip-drip-drip of the IV fluid into the IV line. After a couple of infusions, I started to bring a book to help with the boredom (I read Gulliver's Travels, which I hadn't read in decades. It was a fun book, but his visits with strangers get kind of weird towards the end).

I'm looking forward to switching from bi-weekly infusions to maintenance dosing in January 2026. At that point, I should be able to abandon the IV sticks forever, as Eisai (drug company primarily responsible for Leqembi) is awaiting FDA-approval for their subcutaneous version of Leqembi for maintenance dosing. The approval is expected on July 31.

Back to your upcoming infusions, you should be on the lookout for infusion-related reacions (fever, flu-like symptoms, nausea, dizziness, etc). The Leqembi website has a good section on preparing for infusions, see the link below. You could also checkout their Getting Started → What to Expect section of their website.

https://www.leqembi.com/en/preparing-for-infusions

bhickfang

Thank you!!