A patient’s perspective on the frontlines of amyloid treatments, real-world side effects, and the costly path of trusting the medical establishment.
By Greg Rowland
From my perspective as an early-stage Alzheimer’s disease patient, the evolution of Alzheimer’s research and treatment options is a frustrating and costly experience. Why have the scientific and medical communities made so many mistakes understanding the disease and how to best treat it?
I can’t answer that question with a definitive answer.
In 1907, Alois Alzheimer noticed “one or several fibrils” in the center of an otherwise almost normal cell in the brain of a deceased woman. Prior to her death, Auguste D. exhibited symptoms like those of modern-day Alzheimer’s patients. In addition to the fibrils, Alois Alzheimer found “numerous small miliary foci,” or what are now called plaques, in the cell’s outer layers. Alzheimer declared that “we have to face a peculiar disease process.”
One hundred and nineteen years later, there remain a myriad of unanswered questions about Alzheimer’s disease. In fact, the cause of Alzheimer’s is unknown. Since the cause is unknown, a cure is not available. Drugs designed to slow the progression of the disease are only modestly effective. These drugs, lecanemab and donanemab, are expensive and they carry high risks.
Duke Health recently released a study of 230 Alzheimer’s patients treated with lecanemab. The study found 79% of patients who started lecanemab treatment were able to continue it, and the 21% who discontinued the drug did so mostly due to adverse events. The most closely watched side effect, which involves brain swelling or bleeding, commonly referred to as Amyloid-Related Imaging Abnormalities (ARIA), occurred in 24.3% of the 230 patients.
“This is about buying time in a disease that takes it away,” Andrew (Andy) Liu, M.D., associate professor in the departments of Neurology and Pathology at Duke University School of Medicine said. “And our real-world experience shows that with careful risk-benefit assessments, time can be gained by many patients.”
Based on the landmark Phase 3 Clarity AD clinical trial1, lecanemab slows the clinical progression of early Alzheimer’s disease by 27% over a period of 18 months when compared to a placebo. On average, 27% equates to a 5.3-month delay in cognitive and functional decline compared to those who did not take the drug.
I received 18 lecanemab infusions at Duke Health between October 2025 and June 2026. Duke stopped my infusions at the midpoint of the full regimen due to persistent adverse effects. My frequent chills and shivers were nearly intolerable. I wasted time and money with no slowing of the disease.
For decades, scientists believed amyloid plaque was at the center of Alzheimer’s. The theory is if you remove amyloid plaque, Alzheimer’s progression slows. Lecanemab and donanemab were designed based on this theory. Recent research has turned the so-called “amyloid hypothesis” on its head. It is now believed that there are multiple causes of Alzheimer’s disease.
I believe the ultimate Alzheimer’s therapy will be both individualized and a combination of drugs. Sadly, that ultimate therapy is likely decades away.
In the meantime, patients like me are suffering. Our families and friends are suffering alongside us. The suffering is not limited to the actual disease symptoms; the financial and societal impact can be devastating.
I have spent the past year learning everything a layperson can learn about Alzheimer’s disease. With my new knowledge, I believe the entire community of Alzheimer’s researchers, physicians, and pharmaceutical companies have a role in the errors, oversights, and misunderstandings of Alzheimer’s disease.
Of course, progress toward effective treatment and maybe a cure has been made. From a patient perspective, it is too little. It has been 119 years since Alois Alzheimer declared Alzheimer’s a disease.
Heather Whitson, M.D., co-author of the recent Duke Health study and co-director of the Duke & UNC Alzheimer’s Disease Research Center says, “We at Duke are on the leading edge of generating real-world evidence and AI tools to help you and your doctor make the right personalized medicine choice for you and improving safety for those who do go on treatment.”
I disagree with Dr. Whitson. My wife and I met with Duke Health in September 2025 to discuss my treatment options. Information on both lecanemab and donanemab was presented. Limited information about Alzheimer’s disease was provided to us. We felt an urgency to begin treatment to slow the progression of my disease. Ultimately, we trusted Duke Health’s counsel, and we decided to begin lecanemab infusions.
We closed our business in South Carolina and relocated to Chapel Hill so I would be near Duke Health for the biweekly infusions and related tests. Fast forward twelve months, and I am much worse off than if we had simply declined the lecanemab treatment and remained at our home in South Carolina. We are struggling financially. Stress exacerbates my depression, which is likely speeding the progression of my Alzheimer’s disease.
I believe a patient-focused approach is sorely needed. That focus should begin with allocating adequate public and private dollars for global research to find a cure for Alzheimer’s disease. The patient focus must continue with the pharmaceutical companies, the FDA, and the clinical providers. Is a profit motive inhibiting a true patient focus?
Interested in learning more about me? GregoryRowland.com
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Disclaimer: The views and opinions expressed in this article are those of the author as a patient and advocate and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
https://www.nejm.org/doi/full/10.1056/NEJMoa2212948