Meet The New Drugs That Can Slow Down Early Alzheimer’s

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Time. In the experience of dementia specialist Suzanne Schindler, MD, that’s what patients in the early stages of Alzheimer’s disease so often want. More time to spend with family and friends, doing the things they’ve always enjoyed. More time, even, to do all the things a lot of us don’t enjoy—like running errands and getting dinner on the table.

Until recently, there was no way to buy them more time. The available drugs for Alzheimer’s could only temporarily ease some symptoms—not change anything about the underlying brain disease. But in just the past year and a half, two anti-amyloid drugs—lecanemab (Leqembi) and donanemab (Kisunla)—that can slow the progression of early Alzheimer’s disease have been approved in the US.

The medications are definitely not a cure, and they’re not for everyone, Dr. Schindler, a neurologist at Washington University in St. Louis, tells SELF. Only people with milder symptoms of Alzheimer’s stand to benefit—and since the drugs have only been around for a short time, doctors aren’t sure how long these benefits last. Plus, they’re no picnic to take. They require regular visits to an infusion center and brain scans to catch potentially serious side effects.

Still, she says, “For the right patients, I do think these treatments are worth it.” Read on to learn more about these revolutionary drugs and if they may be right for you or a loved one.

How do these new Alzheimer’s drugs work?

When people have Alzheimer’s disease, their brains slowly accumulate abnormal clumps of two proteins: amyloid and tau. At some point, researchers believe, those protein clumps start wreaking havoc, damaging and killing brain cells and causing symptoms of dementia.

Amyloid clumps (often called plaques) start building up early in the Alzheimer’s process. In fact, people can have amyloid in their brains for up to 20 years before they show any symptoms, Allison Elizabeth Lapins, MD, a neurologist and dementia specialist at Northwestern University in Chicago, tells SELF. Researchers aren’t entirely sure why that happens to some people and not others, but DNA is part of the story. People who have a gene called APOE e4 are more likely to develop Alzheimer’s than people without it—especially if they carry two copies (one from each parent).

For a long time, researchers have thought that if they could find a way to sweep amyloid from the brain before a person develops more severe Alzheimer’s symptoms, they might be able to slow the progression of the disease. That’s where anti-amyloid drugs come in. These drugs work by clearing amyloid from the brain, which doctors can see on specialized imaging called a PET brain scan.

Administered through a needle placed in an arm vein, these medications are lab-made antibodies designed to find and latch on to amyloid in the brain. Once they do, they act like a warning siren to specific immune system cells so they can swoop in and destroy the enemy, which slows down the worsening of people’s symptoms.

Got it—but how well do they work?

When talking to patients about the potential benefits of anti-amyloid drugs, Dr. Schindler usually stresses that the medication will not improve their symptoms. “But,” she says, “I tell them we do expect it will slow the progression of your symptoms and give you more time to do the things that you enjoy.”

In the clinical trials that led to the two drugs’ approval, some patients were randomly assigned to receive the medication and others were given a placebo. In the lecanemab trial, patients on the drug had a slightly slower decline in memory, thinking skills, and day-to-day functioning than patients given the placebo. Over 18 months, their rate of decline was 27% slower overall—which roughly translates to an extra four to six months without worsening symptoms. The donanemab trial had similar results. Patients on the drug had a 35% slower decline over 18 months compared with the placebo group.

Here’s the thing, though: Those studies can only show how big groups of people on the medications fared versus people on a placebo. In the real world, Dr. Lapins says, there’s no way of proving that your symptoms are worsening at a slower rate than they would’ve if you weren’t on the drug.

It’s also unclear how, say, a 27% slower decline would show up in daily life. Do you notice it? In the drug trials, Dr. Lapins notes, some patients did say they felt better—as if they’d stabilized. Dr. Schindler has heard the same from some of her patients but points out that feeling could be due to a placebo effect.

Who might benefit from an anti-amyloid medication?

They’re strictly for people with milder dementia symptoms. This might be someone who has trouble remembering appointments, dealing with finances, or recalling familiar words, for example, but can mostly manage daily life independently. Dr. Lapins says many of her patients are still driving and going food shopping—and some are still working.

The memory and thinking problems should also be new and persistent (not just occasional lapses), Dr. Schindler says. If someone who was always on point suddenly starts missing appointments or mixing up dates repeatedly, that’s a red flag.

The other big requirement to be eligible for anti-amyloid therapy is evidence of amyloid in the brain. Mild memory and thinking problems can have numerous causes other than Alzheimer’s, Dr. Schindler explains—and sometimes it’s as simple as medication side effects or a treatable health condition, like sleep apnea or a thyroid disorder. That’s especially true for people younger than 65, she points out. A neurologist will generally try to rule out other causes. Then, if they suspect Alzheimer’s, they’ll order a PET scan or a lumbar puncture to look for amyloid buildup.

How safe are these new Alzheimer’s drugs?

Because the drugs are given by infusion, some people can have adverse reactions, such as fever, chills, body aches, or difficulty breathing. However, the main concern with anti-amyloid therapy is what doctors call amyloid-related imaging abnormalities, or ARIA—usually small spots of swelling or blood in the brain tissue. Sounds scary (and it can be), but ARIA most often causes no symptoms and goes away on its own, Dr. Schindler says. However, in some cases, it can lead to problems like headaches, dizziness, or nausea, and there is about a 1% chance of it causing potentially fatal brain bleeding or swelling. That said, people shouldn’t start anti-amyloid treatment if they have certain medical conditions or are taking medications that boost their odds of serious bleeding.

And remember that APOE e4 gene? Having two copies also boosts the risk of ARIA. So before people start on lecanemab or donanemab, they need a genetic blood test. There’s no rule against going on the drugs if you carry two copies of APOE e4, Dr. Lapins says. But at her center they’ve decided not to offer the treatment to those patients for now.

Is getting a prescription for anti-amyloid therapy difficult?

This isn’t a treatment you can get from your primary care doctor. Only some neurologists specializing in dementia are providing it at this point, Dr. Schindler says. So access is a big issue. Plus it’s a pretty intense treatment: Because of the ARIA risk, people on anti-amyloid medications have to get several MRI brain scans during the first six months of treatment—the window where ARIA is most likely to show up. That’s a good thing as far as catching possible problems, but it can also be a significant time burden on top of the infusion appointments.

And yes, it all comes with a hefty price tag. Both drugs cost more than $25,000 a year, and then there’s all the PET and MRI imaging. Medicare covers these costs to a degree, but there are co-pays. Private insurance coverage varies.

I’m interested in learning more—what should I do next?

Figuring out whether these treatments are right for you or a loved one is no simple process. However, Dr. Schindler says that getting persistent memory and thinking problems evaluated sooner rather than later is a critical first step. If testing finds that Alzheimer’s is the likely cause, your doctor will share which treatments they feel will manage your symptoms most effectively. They may suggest using an insomnia or depression medication off-label, an older Alzheimer’s drug, or an anti-amyloid drug. Lecanemab and donanemab are definitely a step forward, Dr. Lapins says, but not the final word—and a combination of treatments may ultimately be what’s needed.

Originally Appeared on Self