Navigating Side Effects
Understanding ARIA & the Risks of Alzheimer’s Medications
When families hear about Leqembi or Kisunla, hope often comes first. These medications can slow Alzheimer’s progression in its earliest stages — a breakthrough after decades of waiting.
But along with hope comes caution. Both drugs carry the risk of ARIA — Amyloid-Related Imaging Abnormalities. It sounds intimidating, and for some, it is. But understanding the risks, symptoms, and safety steps can help you make informed decisions and approach treatment with confidence.
What Is ARIA?
ARIA is a side effect seen in some patients taking anti-amyloid medications. It occurs when the brain reacts to the removal of amyloid plaques. There are two main types:
ARIA-E (Edema) — swelling in the brain
ARIA-H (Hemorrhage) — small brain bleeds
In most cases, ARIA is mild and found only on an MRI — not because of symptoms you can feel. But in rare cases, it can cause serious problems and, very rarely, be life-threatening.
Why Does ARIA Happen?
When amyloid plaques are removed, nearby blood vessels may temporarily weaken or leak fluid. This is more common in people with certain genetic profiles — especially those with two copies of the APOE4 gene — and in the first months of treatment.
Real-Life Story: Meet “Helen”
Helen, 69, began Leqembi after testing confirmed early Alzheimer’s. After her 5th infusion, her MRI showed mild swelling. She didn’t have symptoms, but her neurologist paused treatment for a month as a precaution.
“I didn’t even know anything was wrong,” Helen recalls. “If they hadn’t been checking, I never would have known.”
Her doctor restarted treatment at a slower pace, and Helen hasn’t had another episode.
“The monitoring felt like a safety net,” she says. “It made me less scared to continue.”
Common Side Effects Beyond ARIA
While ARIA gets the most attention, Leqembi and Kisunla can cause other side effects, including:
Infusion-related reactions (fever, chills, nausea)
Headache
Fatigue
Dizziness
These are usually mild and temporary but should always be reported to your care team.
How ARIA Is Detected
The only way to know for sure if ARIA is present is with MRI scans. Most neurologists follow a schedule like this:
Baseline MRI before treatment starts
MRI before certain infusion milestones (often before the 5th, 7th, and 14th doses)
Extra MRI if symptoms appear
Symptoms to Watch For
Even though most ARIA cases have no symptoms, you should call your doctor right away if you notice:
New or worsening headache
Confusion or trouble speaking
Vision changes
Dizziness or balance problems
Nausea or vomiting
Real-Life Story: Meet “Cal”
Cal, 72, started Kisunla and felt fine until he experienced sudden blurred vision while reading the newspaper.
“I thought it was my glasses,” he says. “But my wife insisted we call the doctor.”
An MRI revealed mild ARIA-E. Treatment was paused, and Cal’s symptoms resolved in a week.
“I’m glad we didn’t ignore it,” he says. “It taught me to speak up, even if it feels small.”
Managing the Risks
You can’t eliminate ARIA risk entirely, but you can reduce it with careful planning:
Get genetic testing for APOE4 status before starting
Stick to the recommended MRI schedule
Report new symptoms immediately — no matter how small
Choose a provider experienced in anti-amyloid therapy
Make sure your care partner knows what to look for
Balancing Risk and Reward
The risk of ARIA can be frightening — but it’s important to weigh it against the benefit of slowing Alzheimer’s progression. For many, the possibility of preserving more time with loved ones outweighs the risk, especially with close monitoring in place.
Bottom Line
Leqembi and Kisunla have changed the landscape of Alzheimer’s care — but they are not without risks. ARIA is the most talked-about side effect, and while it can be serious, it is often manageable when caught early through routine MRIs.
Understanding what to expect, what to watch for, and how to respond can make treatment safer and less stressful.
💬 Need help deciding if the benefits outweigh the risks?
I work with families to explain ARIA, review safety plans, and prepare them for the monitoring process — so you can feel confident in your decision.
📅 Book your free 10-minute clarity call: https://www.memorytreatmentadvisors.com/schedule
