My Alzheimer's Journey

Part 28 - Side Effects Will Not Go Away

It has been about 41 hours since my infusion. My side effects are refusing to stop. I have flu-like symptoms and severe muscle cramps.

While I could not sleep last night, I took a very deep dive into researching Lecanemab infusion side effects.

I read a Medical News Today article that said the more common side effects may last “a few days to weeks.” This is the first article I have read that says the side effects could last a few weeks. The article considers the more common side effects to be flu-like symptoms, body aches, and headaches.

A Mayo Clinic article goes into more detail about side effects. It lists thirty “more common” side effects. Of the thirty side effects listed, I am experiencing twenty of them. Loss of appetite, chills, dizziness, muscle aches and pains, unusual tiredness or weakness are just a few of side effects currently haunting me.

For anyone reading this blog post that has a loved one scheduled for Lecanemab, I encourage you to be prepared for painful side effects. The Duke care team warned me about side effects; however, their warning should have been more detailed. Not to totally blame Duke because they are still learning about the drug with every new patient.

In my research last night, I learned the FDA has an online voluntary reporting website called MedWatch. This site tracks new drug side effects. I will be sharing my experiences later today.

The side effects have a snowball or triggering effect. The consistent pain triggers a feeling of loss of hope, frustration, and depression. Not having an appetite adds to my already weak state. To be very frank, the whole situation sucks.

At least I have awesome caregivers. Linda takes excellent care of me, even when she doesn’t feel the best. And, the cats are learning how to be comfort givers.

Nobody said this journey would be easy.