A Patient’s Perspective on Actemra (tocilizumab) for Autoimmune Encephalitis

Many people have been asking me about Actemra (tocilizumab) given that I started a monthly dosing regimen of it a few months ago. Below you’ll find some common questions I’ve been fielding.

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Scrambled in the City

I’m walking down the street of a major American metropolis, bagel in hand, rushing to find a park bench so I can log in to Zoom. I look down at my feet, pause, and whip out my phone.

Perfect. This will do. *shutter click*

Leave it to a patch of dingy city sidewalk to embody my feelings of living with an inflamed brain.

Relapsing… again. Autoimmune encephalitis round #3: Let’s go 🥊🥊🥊

Autoimmune encephalitis (AE) is a nightmare.

Internists don’t want to touch it. Psychiatrists look on with sympathy. And most neurologists would rather not acknowledge it at all, unless scores of paraclinical investigations are screaming in their face.

So you might begin to imagine how dejecting it feels to be the one actually living with this illness.

This is what it took to lift me out of an autoimmune encephalitis relapse

The plane lifts. Like many traveling for the first time since the pandemic began, anxious feelings churn beneath my calm exterior.

Is it safe to fly? Will I regret this later?

Different highs, different lows | Monthly Resilience Report: November 2020

Good news! Bad news! Good news!

…and repeat!

Every week brought some different health surprises, the details of which matter much less than how I’m closing out this month (more on that later). Let’s just say that when there are multiple professionals on your healthcare team, the strain in coordinating communications and getting them on the same page becomes bloated.

The information on this site, such as text, graphics, images, and videos, is designed to provide a patient perspective on understanding and living with chronic illness. It is for general informational and entertainment purposes only, and does not serve as a substitute for consulting with your own healthcare professionals or conducting your own research. It is not intended to serve as medical advice, or to be used to diagnose, treat, cure, or prevent any disease. While every effort is made to provide accurate information on the subjects discussed, no responsibility is assumed for any errors or omissions in the content. Always seek the advice of a qualified healthcare professional to assess and guide your medical care.

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