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A MyLupusTeam Member asked a question 💭
Richmond, IN

I have been told that I have Neuro Lupus. Is that where the Lupus attacks the brain? And what can be done?

February 2
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A MyLupusTeam Member

My mind was definitely affected. The headaches and brain fog. It can make you stay in bed all day. But one day I wake up and boom, no symptoms at all.

February 3
A MyLupusTeam Member

Omg - thank you for posting this!

February 3
A MyLupusTeam Member

Karen, as AI notes, the term "neurolupus" may refer to minor issues such as benign headaches or brain fog, which we commonly experience. I've experienced these symptoms, too. These issues generally require better self-care and more rest rather than any intensive interventions. More serious issues, such as seizures or cerebritis (brain inflammation), would require higher doses of immunosuppressants.

Would you want to share what issues you're having? Whatever they are, I hope you feel better soon.😘

February 3 (edited)
MyLupusTeam

Has anyone else been diagnosed with neurological lupus, and does it mean lupus attacks the brain?

Yes, you're not alone. Neuropsychiatric lupus (NPSLE) affects somewhere between 12 to 95 percent of people with lupus at some point, though the wide range reflects how differently it affects each person. About 39 to 50 percent Show Full Answer

Has anyone else been diagnosed with neurological lupus, and does it mean lupus attacks the brain?

Yes, you're not alone. Neuropsychiatric lupus (NPSLE) affects somewhere between 12 to 95 percent of people with lupus at some point, though the wide range reflects how differently it affects each person. About 39 to 50 percent experience nervous system complications.

NPSLE does involve lupus affecting the brain, spinal cord, and nerves. It happens when inflammation damages the blood-brain barrier—the protective shield that normally keeps harmful substances out of your brain. Once weakened, immune system cells, proteins, and inflammatory molecules can enter the brain and cause problems.

Blood clots can also form in the brain when certain lupus antibodies get through this damaged barrier, potentially causing strokes or bleeding. What symptoms might you experience?

NPSLE causes a wide range of symptoms affecting how you think, feel, or move:

Common symptoms:
* Brain fog (memory, concentration, thinking problems) - affects up to 80 percent
* Headaches - 12 to 28 percent
* Anxiety - 6 to 40 percent
* Depression - 7 to 65 percent

Less common symptoms:
* Seizures - 7 to 20 percent
* Stroke or reduced blood flow - 8 to 15 percent
* Psychosis - 0.6 to 11 percent
* Numbness or tingling from nerve damage

Symptoms may appear during flares and often improve with treatment. What can be done about it?

Treatment depends on what's causing your symptoms:

For inflammation:
* Corticosteroids and immunosuppressants to calm the immune system and reduce brain inflammation

For blood clots:
* Blood thinners like warfarin to prevent clots and stroke

For specific symptoms:
* Anti-seizure medications for seizures
* Antidepressants for mood disorders
* Antipsychotics for severe mental health symptoms

The key is open communication with your doctor about any neurological or mental health symptoms you're experiencing. Many people don't mention these symptoms, and doctors don't always ask, so speaking up is crucial for getting the right treatment.

February 2
A MyLupusTeam Member

Hope you feel better soon.

February 4

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