Backed off Leqembi

Mr Newhouse

I was diagnosed in 10/8/25 (my birthday) and had my first infusion on 2/24/26 which resulted in really severe headaches and fever for 2 or 3 days. I was unable to get in contact with anyone so I stopped until I could speak with a doctor. Crickets. I saw another Dr who was conducting a study but it was explained that I’d have to start all over with the admittance and drug waiver. On 3/30/26 I got a virtual visit with a PA and agreed to proceed and on 4/7/26 I had my 2nd infusion. It was better but I was still in bed and not able to continue my work. On 4/23/26 I had my 3rd and was again aggravated with intense headaches and a lack of medical contact other than text's wanting to schedule another infusion/MRI/Scan. Other that texts I have not continued the process. My clarity has greatly improved to the point that my wife and brother believe that I have become as I was a year ago. I had gotten into a hard to describe “fog” and the “down time” after bi-weekly infusions made my self-employed work almost completely impossible (Video production). I am anxious to hear how others have done. I don’t mean this to sound like I’m complaining but rather wondering if anyone else has been affected like this. Again, the lack of medical communication has been disappointing as this is a serious issue.

Brien

Sorry you have had trouble. My wife and I just completed and assessment at Mayo clinic Rochester. Excellent service there. Unfortunately my wife is among the 2% of the population with double APO e4 genes. Makes infusions very high risk but possible. The neurologist there emphasized that in higher risk folks or ones with side effects would back off on the dose and go with very slow increases. He also emphasized the importance in rapid access to the prescriber in case of side effects. The ARIA side effect can be easily mistaken for other issues. Hope you are able to arrange better communication in the future.

Mr Newhouse

I have one of the APOe4 genes and I suppose that is the root of my ongoing headaches etc though the MRIs didn’t indicate any issues related to ARIA. Just lucky I suppose.