Leqembi: Anyone else taking this infusion to slow dementia?

We started slowing down the rate that the medicine went into his body, from 1 hour to 2 hours. Our neurologist also prescribed 2 Tylenol and 1 Claritin before the infusion. This helped a lot, but was still getting shivering cold afterwards. We then started taking 2 Tylenol and 1 Benadryl 4 hrs after the Pre infusion dose was given and then another 2 Tylenol and 1 Benadryl after another 4 hours and this seems to work. We have done this 2 infusions with success. Also we are getting the infusions about 10am so we can be done with any reactions by bed time. He is just tired the next day.

We were told, after the fact that the first infusion is the worst for side effects. For us it has gotten better. We premedicate, slow down the speed of the infusion and follow up with meds afterwards.

Remember, NO blood thinners unless absolutely necessary

We also call before we go to the infusion center and have the pharmacist remove the medication from the freezer to help get it closer to room temperature before our appointment.

My husband (57) started with Lequembi in April. We've only had two infusions so far because at approximately an hour and a half after compleation, he had "convulsive syncope". It's been decided this isn't a "side effect" - not enough time has passed for the medication to cross the blood-brain barrier. This is more of a "reaction" to the infusion. Is anyone else having this, or some other unique side effect? To the extent this group is monitored by a medical provider - thoughts? We're scheduled forva third attempt later this week. I'm thinking heart monitor, bp monitor, and pulse ox, so we can capture what is actually happening, then work on figuring out how to mitigate.

@katmo. Welcome to Mayo Clinic Connect! I’m so glad you found the site! Your posting
really shows how valuable the site can be. Patients and their families tell their experience with procedures, doctors, and medicines. Thank you for your post!

They monitor my husbands vitals thru the entire process. The doctor has slowed down the infusion drip rate from 1 hour to 2 hours and that plus Tylenol and Claritin prior to and after the infusion helped to control the side effects. Although he did not have the same "reaction" that your husband has had.🙏

We are in the early stages of diagnosis and treatment. My husband is on his 8th infusion. He is tolerating the infusions well. I have been so focused on his infusion schedule ( every other week) that I have neglected getting other therapies for him: speech and cognitive.
MRIs track complications, NOT the progression of the disease. I need to ask the doctors if therapy will “strengthen” the rest of his brain.
I have a lot to learn.

My husband decided to quit the Leqembi infusions after only four. He didn't have any adverse reactions but decided that the bi-weekly infusions, combined with the necessary MRIs to check for brain bleeds, were just too risky (and time-consuming) compared with the slight slowing of Alzheimer's progression for a few months. Not surprisingly, we didn't notice any improvement in his memory during the time he was receiving the infusions.

My wife is in the early stages of Alzheimers. We have read everything available on leqembi and alternative experimental drugs. We have concluded that the risk/reward and cost/benefit of those drugs are not worth it at this time. At best they may slow the decline, but we question whether there is any real evidence of slowing the decline. Some say is slows it by a very few months, but it's not worth the risk.