What follows below is commentary on what I’ve noticed occurring in the AE world as a patient with an encephalitis-wearied set of eyes. ***Please take what I say with a grain of salt, do your own research, and talk to your own medical providers. I’m not an authority; I’m just a fellow AE survivor partially reflecting insights collected from others, and partially adding in a dash of my own spice.***
While being diagnosed with autoimmune encephalitis (AE) in the first place is scary, failing treatments that normally give people their lives back is despairing. Recognition of the failure is slow. You’re told to hang tight and be patient for the immune system to adjust; but as months pass by without sustained improvements, the feeling that something is wrong begins to take hold.
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.
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.
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.
Two years ago this month, I was hospitalized for the first time. I was diagnosed with seronegative autoimmune encephalitis (AE). And I started 5 months of immunotherapy, roughly 5 years after my illness first began.
By November 2019, I thought the battle was won: I seemingly had all the answers to solve my medical mystery, which had been open since 2014. It was clear by that point that standard AE treatments had worked wonders to bring me back to my original baseline of good health and cognitive functioning. Sure, I knew relapsing was a possibility; but were that to happen, I figured that healing again would be as simple as resuming Rituxan.