What is Lupus Cerebritis?
Last updated: January 2023
Four years after I was diagnosed with lupus, I stood up from my desk one afternoon and forgot how to walk. My feet and legs didn't hurt; they just remained rooted to the ground and refused to move. Asking my legs to lift and carry me across the room felt as foreign as performing a backflip.
Terrified, I called my mother, my hands shaking as I held the phone. "You can still think and reason," I told myself. "Get help." When my mother's car pulled into the driveway, I shuffled towards it, deliberately sliding one foot in front of the other and touching the wall for support.
Help from my rheumatologist
Like many patients with complicated chronic illnesses, I did not head for the emergency room, where nurses and doctors handled burns and broken bones, and straightforward, "normal" injuries. I believed that my best hope for recovery was with the nurses who knew my name and the doctor who had studied my file.
The nurse prepared a steroid shot when I showed up at my rheumatologist's office without an appointment. Ultimately, the steroid shots and infusions I'd receive over the next week would not be enough to dull the severity of this lupus flare. Over the next few weeks, parts of my brain would slowly shut down. I would forget my parents' names and my social security number. I'd forget parts of my life as my long-term and short-term memory slipped away. I'd forget my favorite color and how to tell time and lose sensation in my left hand. I would hallucinate fireworks on my bedroom ceiling, and my personality would temporarily change into one my family and friends didn't recognize. It would take me two years to finally recover from this flare.
What is lupus cerebritis?
Lupus cerebritis, or brain inflammation, is a rare and severe manifestation of lupus. Rather than attacking invading germs, lupus hijacks the immune system to attack the body's own organs and tissues. When lupus attacks the brain and central nervous system, it's called cerebritis.1 Lupus cerebritis can be severe like mine was, causing extreme cognitive issues, personality changes, and psychosis. It can also manifest as cognitive dysfunction, often referred to by patients as "brain fog." Brain fog is a sense of disorientation, slowed thinking, and short-term memory loss. If you experience brain fog, it doesn't necessarily mean you have lupus cerebritis. However, you should definitely speak to your rheumatologist about your symptoms.
Lupus cerebritis treatment
Treatment for cerebritis varies and depends on the patient and doctor. What saved my life after I was diagnosed with cerebritis was a heavy dose of immunosuppressants, oral steroids, mood stabilizers, and 3 emergency infusions of IV steroids. I also couldn't have gotten through this difficult time in my life without my mother, who moved in and cared for me; my family, who drove me to appointments, sat with me, and brought me food; and my friends, who never stopped believing in my recovery.
Aware of brain flares
The day I forgot how to walk wasn't my first experience with cerebritis; unfortunately, it wasn't the last. My doctor has told me that my disease's tendency to attack my central nervous system is a pattern. Every few years, I might experience a significant brain flare. When I'm more tired than usual or notice signs of cognitive dysfunction, I immediately make an appointment with my rheumatologist. I will only ever have one brain; nothing is more important than taking care of it.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?