My Alzheimer's Journey
Part 157 - Goodbye Lecanemab
As I explained a few days ago, I am struggling with frequent chills accompanied by clammy skin. The persistence and severity of the chills are negatively impacting my sleep and my overall mental health. Stress and poor sleep accelerate cognitive decline and worsen brain health.
After a thorough medical exam, my awesome team at Duke Neurology determined the most likely cause of my chills is a reaction to Lecanemab. It was decided yesterday that I should stop the Lecanemab infusions. Additionally, I will take medication starting today to manage and hopefully eliminate the chills.
It will take about two months for Lecanemab to leave my body. In a few weeks, the results of the Syn-One test will be available. With a clean immune system and the knowledge provided by the Syn-One test, Duke Neurology will determine the best treatment path going forward.
To understand why I am reacting to Lecanemab with chills, we have to review Alzheimer’s characteristics, and how Lecanemab works.
Alzheimer’s is either caused by the onset of amyloid plaques in the brain or amyloid plaques are the result of Alzheimer’s. Regardless, toxic protein particles—known as oligomers—are the building blocks of amyloid plaques. The toxic protein particles ultimately cause neuronal death and eventually Alzheimer’s. In a healthy brain, microglia, the brain's immune cells, actively clear and destroy the toxic proteins.
Microglia can become overwhelmed, sluggish, or chronically inflamed. Eventually, their clearing capacity drops below the rate of protein production. The toxic particles begin to escape destruction, pile up, and eventually form the neurodegenerative plaques and tangles that drive diseases like Alzheimer’s.
Lecanemab is a monoclonal antibody (a protein that helps your immune system target specific proteins for removal), and it is designed to remove amyloid beta from the brain. However, “associated side effects have compromised its efficacy, and little is known about how this antibody is able to clear the toxic aggregates.”1
Chills are triggered by the immune system to artificially raise the body's temperature and fight off infections. White blood cells release chemical signals that "trick" the brain's thermostat into demanding a higher temperature. Because the body's actual temperature is lower than this new target, it initiates involuntary muscle contractions - shivering - to generate heat.
Another factor is that the brain damage associated with Alzheimer’s impairs the hypothalamus, the body’s internal thermostat. This disruption compromises the autoregulation system, preventing the brain from properly sensing temperature changes, communicating discomfort, or regulating blood flow to the hands and feet to maintain core body heat.
As I understand, there are two possible causes of my chills:
something about Lecanemab altering my immune system
Alzheimer’s has damaged my body’s thermostat (this is unlikely since my Alzheimer’s is in early stages)
I have written the above explanations in simple, layman’s terms. My words are my interpretations of facts gathered from several research studies, and my understanding of the human body and Alzheimer’s. I have no absolute knowledge that Lecanemab is causing my chills.
Frankly, I find my situation an important part of the mystery of Alzheimer’s disease. Thousands of brilliant researchers are working around the globe to learn the cause of AD, how to best slow the progression of AD, and eventually prevent and/or cure AD. Maybe my chills will play a tiny part in improving future drug development.
Have a great weekend everyone. Thank you for your continued support.
https://www.news-medical.net/news/20251125/Study-elucidates-how-anti-amyloid-antibody-therapy-lecanemab-works-in-Alzheimers-disease.aspx
Greg’s Alzheimer’s Research Report
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I'm sorry to read that, due to side effects, you are discontinuing your Lecanemab treatment. I will be interested to read what the experts recommend next. I am currently off my AD trial drug also as a result of side effects. I have experienced an ARIA-H, a type of cerebral micro hemorrhage. I am asymptomatic. It was detected in a routine MRI. My last dosing was withheld. I have another MRI scheduled in 10 days to determine whether the ARIA-H has resolved. If so, I will be permitted to return to dosing.
The current theory is that the ARIA-H was triggered by my carotid artery surgery nine days prior to the MRI. Amyloid therapy creates a vulnerability to ARIA-H so that basically set the stage. My right carotid was severely blocked. The endarterectomy was necessary. I hadn't anticipated that my other healthcare needs would interfere with my AD treatment but there are a lot of things happening these days which I did not anticipate. I hope your side effects clear up quickly and your body thermostat returns to normal function. I look forward to your next post.
Linda