Benched By My Brain

Turns out you can be a model patient and still get benched.

I wasn’t a bad trial participant. I wasn’t belligerent. I didn’t skip appointments. I didn’t refuse the medication or sneak out the back door when it was time for another scan.

Quite the opposite. I was a very good patient.

I spent hours in the neurologist’s office and the radiology office. I showed up for the tests, the MRIs, the PET scans, the endless poking and prodding. I took the medication exactly as directed.

And then…my brain said, “Not so fast.”

The medication appears to have caused a micro-hemorrhage, a tiny brain bleed. Tiny, but not exactly the kind of phrase you want casually dropped into conversation.

This is one of the known side effects of anti-amyloid drugs. It falls under the glamorous umbrella of ARIA, which is shorthand for amyloid-related imaging abnormalities. In plain English: sometimes these drugs can cause swelling or small areas of bleeding in the brain that show up on MRI.

So now I’m off the medication for a couple of months to see whether it heals on its own.

If it does, I stay in the trial and go back on the medication. If it doesn’t, I’m out.

A very TBD moment.

The ironic part? In this trial, there’s a placebo group, a low-dose group, and a high-dose group. Well, now I know I’m definitely not on the placebo. So that’s…something. Not exactly the kind of confirmation I was hoping for, but still, useful information.

At this point, I’m apparently in one of the “real drug” groups, low dose or high dose, which is actually good news. I just need my overachieving brain to stop reacting quite so enthusiastically.

The really ironic part is that something similar happened to my mom.

She’s on Lecanemab (Leqembi), given by infusion every two weeks at Emory, about a two-hour drive each way for a 45-minute infusion. Not painful. Not dramatic. Just another item on the calendar in the world of modern medicine. After about a year on the medication, she also developed a brain bleed. It healed, and she went back on treatment. The scans showed the drug was helping clear amyloid plaque, perhaps a little too enthusiastically.

That seems to be the strange trade-off with these medications: the good news is they may help clear plaque; the bad news is that sometimes they do it in a way the brain does not completely appreciate. FDA prescribing information for both Leqembi and Kisunla warns that ARIA can happen early in treatment, is often asymptomatic, and can include micro-hemorrhages seen on MRI.

So here I am: not kicked out exactly, but not exactly cruising forward either.

Paused. Waiting. Hoping my brain heals and I get back in the game.

Which is a weird sentence to write, but welcome to this chapter.