Leqembi infusions

srgarber · May 20

I am new here. My husband is 79 with mild cognitive Impairment but a diagnosis of Alzheimer's. He just had his first Leqembi infusion yesterday afternoon. He was fine until about 2 hours after the infusion, then had chills, then was shaky. A little later that went away but he had pain in his legs and back. That lasted for a few hours but the back pain came back during the night and he got little sleep. Today there is no pain but he has been exhausted all day. I have read some information on likely side effects but wonder what this group has experienced themselves. Is the exhaustion common? How long does it usually last? And, how likely is it that our experience on this first time will change as we continue the infusions?

And -thanks for any thoughts you have about my questions.

SDianeL · May 21

I would call his doctor. You can search this forum for Leqembi to read old posts until someone replies.

Chas/Judy · May 21

My husband has had his sixth infusion with no side effects. If your LO is having these reactions, I would check with his doctor.

rplourde50 · May 21

oftentimes the side effects subside after the first couple of doses.

Dusty217 · May 21

My LO has had 2 treatments and after the first had chills, fever and headache. Exhausted the next day. Same on 2nd but less intense. He had follow up first MRI and no ARIA. so far what we were told to expect. Goes for #3 tomorrow and was told less side effects likely.

MaryMN · May 22

My husband also had chills, muscle pain, and headache after his first infusion. That was the only time he experienced any side effects. He has now completed 2 years of bi-weekly infusions and transitioned to a maintenance schedule.

I would suggest that you make sure your husband is well hydrated before an infusion.

NYCalz · May 22

https://alzconnected.org/discussion/comment/272955#Comment_272955

I am curios as to what benefits/improvements your husband has experienced after 2 years of infusions. We were told that it was unknown how it would help beyond 18 months. Besides the obvious benefit of extending the time w/LO, what did you see/experience?

We chose to not go this route and chose quality of life and freedom to just be.

MaryMN · May 22

He had a PET scan at the end of the two year mark and the amyloid plaque in his brain is totally gone.

Having said that, he still experienced a decline but is still able to perform all his ADLs and is quite active socially. Without a clone not receiving the infusions it is obviously impossible to know to what extent the infusions helped. He was diagnosed at age 66 and we thought the risk was worth it to extend his quality of life. The inconvenience of going in for a infusion that took 90 minutes at most (including drive time) was minor.

He also stated that you never know when a cure will be found and he wants to around for it!

Leqembi infusions

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