Three heads are shown - one has all lightbulbs lit, the second has 2 out of 5 lit, and the third has all lightbulbs out in the brain.

What is Lupus Cerebritis?

Last updated: April 2022

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 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.

When I showed up at my rheumatologist's office without an appointment, the nurse prepared a steroid shot. 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' name 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, how to tell time, and I'd 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 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, and it, unfortunately, 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 major brain flare. Now when I'm more tired than usual or notice signs of cognitive dysfunction, I make an appointment with my rheumatologist right away. I will only ever have one brain, and nothing is more important than taking care of it.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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