What is Lupus Cerebritis?

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.

Seeking specialized care for my diagnosis

Like many patients diagnosed with lupus, 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 slowly shut down. I forgot my parents' names and my social security number. My long-term and short-term memory simply 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. My personality changed until I was unrecognizable to my family. It took two years to fully recover from these lupus cerebritis symptoms.

What is lupus cerebritis?

Lupus cerebritis, or inflammation of the brain, 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

This condition can cause extreme cognitive issues, personality changes, and psychosis. It can also manifest as "brain fog." This is a sense of disorientation and slowed thinking. Having brain fog does not always mean you have cerebritis. However, you should always speak to your rheumatologist about your symptoms.

Treating central nervous system inflammation

Treatment for cerebritis varies and depends on the patient and doctor. What saved my life after I was diagnosed with lupus 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.

Living with the risk of future 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 attacking 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.