Starting LEQEMBI next week need some advice

I'm on Kisunla and not Liqembi, but at the place I get my infusions there as many Liqembi people in the room as Donanemab.

(1) So, here's what's common between the two: neurology nurses are super well-trained in giving infusions. You won't even feel the tiny prick (and you can close your eyes if the sight scares you).

(2) In my neurology practice they recommend that people take 1000 mg Tylenol around 30-45 minutes before you'll arrive, because sometimes the infusion (not the drug, but the fact that the liquid is cold!) can give you a headache. Call your neurologist's office this week to find out how to prepare.

(bring an iPad or a book. Keep in mind that you'll be sitting in a chair and will need to keep one arm on the arm rest (you get to decide which arm), so a book or an iPad - whichever you can handle with one hand.

I have never had any bad effects from the infusion. I've gone straight from the neurologist's to the gym, or out for dinner. But they will be watching out for you, so you don't need to worry. DO make sure to tell the nurse (or whoever is giving the infusion) about your TIAs and any other negative things that have happened in the past month, so that they can watch over you.

The bottom line is that it's not a big deal and if you can manage your fear, you'll be totally fine!

I've had 43 Leqembi infusions (I'm now on maintenance dosing after the initial 18 months of bi-weekly infusions). I'd say that I've definately felt the needle insertion for maybe 3/4 of the infusions. I'm no expert, but from my research it seems the pain receptors in your arm are randomly located throughout your arm. Whether or not you feel pain with the needle insertion depends on whether or not the location chosen by the nurse to insert the needle happens to be located on top of (or very near) a pain receptor. If so, then you will feel some pain. But if the insertion is not near a pain receptor, then you don't feel the needle insertion at all.

After the Leqembi infusion is completed, many (most?) infusion centers follow the guidelines which suggest a waiting period to watch for any reactions to the drug or to the infusion. After my 1st infusion was over, the initial waiting period was a couple of hours. This greatly decreased with subsequent infusions. Nowadays, after an infusion of Leqembi they follow-up with an small infusion of plain saline to flush the remaining Leqembi out of the tubing. Following that 2nd infusion (which lasts maybe 20-30 minutes), I'm free to go.

As I don't like needles, I presumed the IV would be removed during the waiting period. I was wrong, they leave the IV in during the waiting period. This is apparently so they can quickly administer some drugs if you do experience a reaction to the infused drug. For me, this was the worst part of my first infusion - the lengthy waiting period after the Leqembi infusion was completed to check for reactions to the infusion.

My wife completed a year of bi-weekly infusions and has been on at-home maintenance since January. She was taking a Tylenol before infusions because she had the mild reaction after the first one - body aches and tiredness. No issues since and no need for Tylenol with the auto injector. As others have pointed out, the infusion center nurses are incredibly well trained and very experienced. Most have been doing infusions of other medications long before Leqembi came along. Share your concerns with them and they will do everything possible to see that you're comfortable. Not getting the Leqembi is not an option right now. Eventually, they might come up with an oral medication, but you don't want to wait. My wife's condition has been stable since she started treatment 12/2024, but, unfortunately, she had already lost her short-term memory, so that's something we have to deal with. But she has retained all of her self-care skills, and, most importantly, her personality.