My Alzheimer's Journey
Lecanemab Side Effects or Adverse Events
I have always been a curious person. Tell me, show me, and let me learn the facts about everything I am involved in.
I woke up very early this morning with my curiosity in high gear. Why are my Lecanemab infusion side effects delayed a day or two after the infusion? With a cup of coffee in hand (thank you to the unknown person who sent the Cuisinart Grind & Brew Single-Serve Coffee Maker – I LOVE IT), I started digging deep into the internet.
The first thing I learned is that the 60-minute infusion only puts the Lecanemab into my bloodstream. None of the Lecanemab crosses the blood-brain barrier (BBB) during the actual infusion process. Crossing the BBB is a much slower, passive biological process that takes place over days and weeks after the infusion is complete. Based on several articles I read, this is a common misconception.
During the two weeks between infusions, about 0.1% of the Lecanemab in my blood crosses the BBB. This is inefficient! Researchers are working on new technologies to penetrate the BBB. Focused ultrasound seems promising.
While sipping coffee and petting Big Bit, I found an article that discussed the FDA’s Adverse Event Reporting System (FAERS). From that article, I jumped to the actual reporting system. For anyone who loves data, FAERS is your jam! This is a database that allows drilling down to the most detailed information you can imagine.
I went to Lecanemab and began digging. There are a lot of adverse events listed - even deaths. I think it is important to balance the adverse events with the benefits. I knew Lecanemab came with risks when I decided to take it. The adverse events are greater than I expected though.
My awesome primary infusion physician at Duke Neurology prescribes medications that successfully manage my adverse events. I am confident Duke takes every precaution possible to keep every patient taking Lecanemab as safe as possible.
Do all hospitals and infusion centers take those same precautions? I certainly hope so.
My only disappointment with Duke and Eisai Inc. (the lead company for Lecanemab’s development and the final decision maker) is the lack of full transparency during the treatment decision-making process. Linda and I met with several Duke Neurology staff, and they explained the two treatment options - Lecanemab and Donanemab. We were provided literature for both drugs. The risks were clearly explained. Yet, looking back, full transparency about adverse events was missing.
Let’s set the stage for that meeting. Linda and I were scared beyond words. We knew our world was being turned upside down due to my Alzheimer’s diagnosis. More importantly, we did not fully understand Alzheimer’s disease. We were unaware of current treatment research. At that moment at Duke, Lecanemab seemed to be my best treatment option.
After seventeen infusions, the scenario is much different than the day we agreed to take Lecanemab. I have become an amateur expert on Alzheimer’s disease, emerging treatments, research challenges, Lecanemab, and the horrible realities of the disease. I have experienced the adverse effects of Lecanemab - ranging from intense shaking during chills to painful body aches.
Today, I am an educated Alzheimer’s patient.
I would make the same decision today that we made at Duke in September 2025. I would choose Lecanemab as my best treatment option. My frustration is that more transparent information was not provided by both Duke and Eisai. Looking back, I believe enough information was provided about the risks of Lecanemab to meet regulatory and liability requirements, while positioning the drug as a great treatment for my Alzheimer’s.
As a life-long business owner, I understand the need to sell and keep revenue flowing. For pharmaceutical companies, revenue funds research. I also believe an educated consumer is a better long-term supporter of a product and manufacturer. In the case of Duke and Eisai, transparency about adverse effects would not have changed the decision I made. It would have made me prepared, set true expectations, and made me a happier patient.
In recent months, I have shared these thoughts with Eisai.
I believe a video with a patient talking about their Lecanemab experience is needed. Show the infusion process, explain the possible adverse events, suggest preparations for adverse events, show an MRI, and talk about the great potential benefits of Lecanemab. Create an informed patient, not a frightened one.
Time for more coffee. Have a great Sunday.
Greg
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I really appreciate the information you share about your trial experience and what you have learned. I am in a clinical trial for remternetug, sometimes referred to as next generation donanemab. Since I live alone and don't have any family, I frequently feel very isolated in this. Friendships often don't bear the weight of discussing my AD journey well. Now I'm off to learn more about adverse events associated with remternetug.
I was holding my breath for the next paragraph!
“I would make the same decision today…”