Lupus psychosis or  Neuropsychiatric Lupus sounds pretty scary right? Well it is. It may also sound pretty far fetched…. That it is not!!!!It is a truly scary condition that someone with lupus can deal with, but others who don’t have lupus might have trouble understanding.  So what exactly IS LUPUS PSYCHOSIS??? Or Neuropsychiatric Lupus? The American College of Rheumatology (ACR) has identified “19 different ways that lupus can affect nervous system, including the brain. This complication of lupus is known as neuropsychiatric lupus, or NPSLE. Compiled research suggests that as many as 90 percent of adults, adolescents, and children with lupus will at some time experience the devastating effects of NPSLE” According to MedicineNet  “Systemic lupus erythematosus can cause inflammation of virtually any tissue of the body. … When lupus affects the brain, it can lead to headache, seizure, stroke, or psychosis. Psychosis is a serious mental disorder featuring defective thought processes, frequently with delusions or hallucinations.” 
See scary stuff. But we never hear of it!? Is it really that common? No. I’ve never heard of it, it must just be a couple people here and there? Well….. that’s actually not the case.  According to National Institute of Health, Neuropsychiatric manifestations are present in two-thirds of the patients with SLE.[system lupus erythematosus]. The most common neuropsychiatric manifestations in SLE are cognitive deficit (49.33%), lupus headache (23.11%; in 57.69% of these patients, tension-type), psychoses (12.00%), seizures (10.67%), and cerebrovascular events (9.78%).[3]. So there you have it. Lupus psychosis is seen in about 12% of those with neuropsychiatric manifestations!  Who knew.

Now that we know that this happens way more frequently than we thought let’s look at the symptoms of  Lupus Psychosis//Neuropsychiatric Lupus(NPSLE). The most common side effects or problems people who live with with Neuropsychiatric Systemic Lupus Erythematosus is cognitive dysfunction. This simply means that they have a hard time concentrating or they have a hard time with reason or problem solving or recalling memories. These symptoms may not seem problematic to the average joe but to a person suffering with them they can disrupt all aspects of life. I can personally tell you. They can affect your work, your ability (or lack thereof) to organize, ability to learn new things, ability to Process visual-spatial things, and language issues. For kids and adolescents the effects of NPSLE is usually on school work. 

The most common complication of NPSLE is cognitive dysfunction, meaning difficulty concentrating or reasoning and problems with memory and recall. These symptoms can disrupt all aspects of life, including the ability to plan, work, organize, and learn, visual-spatial processing, and language. For children and adolescents especially, this effect of NPSLE on school performance is a major concern. To make SLE harder for kids and adolescents to deal with because  NPSLE occurs often. Usually early in the course of the disease process and in children usually happens with great severity.  However, other symptoms can be life-threatening. These including seizure and strokes. These can be major causes of illness and be major causes of changed quality of life or even brain damage and death. At this point there is no point that can gauge if Lupus is affecting your Nervous system. However, we do know that NPSLE can be present even if a persons SLE is inactive in their other organs.  Sadly, even though there are medications to treat symptoms of SLE with nervous system involvement, but not ALL PEOPLE with NPSLE will respond to those current medication. And the side effects of these meds can be quite undesirable. 
We have now looked at  the frequency and the symptoms of this condition but I was curious as I’m sure you are as well , if there is a cause. So I did a little more research. And I really I didn’t find much that I hadn’t already found. According to the National Institute of Health “Psychiatric symptoms in SLE can be functionally independent psychiatric disorders. It can be due to drugs (steroids) used for SLE or secondary to SLE because of its brain involvement, which is termed as neuropsychiatric systemic lupus erythematosus (NPSLE).”

I talked with a couple of people who have suffered with Lupus Psychosis and this is what they told me: Melissa said ” I have dealt with lupus psychosis a few times. Both times I ended up being admitted and tested for every illegal drug under the sun because they couldn’t figure out what was wrong with me. It was scary I couldn’t feed myself, work a phone, or even the tv remote. I couldn’t even recognize my family. Then I was having these crazy physcadelic dreams. And I would cry to my parents that the nurses were making me clean hallways of the entire hospital with bleach on my hands and knees.  It is definitely a scary ordeal and something I hope to never experience again.”

Susan’s experience is a little different. She said “I get brain fog often. Sometimes when people are talking I don’t understand what they’re saying, even though they’re speaking English. Then there’s the persistent searching for words and forgetting things. It’s especially embarrassing when I’m teaching and I know what I want to say but the word won’t come out.”

Living with a condition with Lupus Psychosis or NPSLE is a difficult one. And it truly Becomes a family affair. Because it affects the persons children, parents, siblings etc.  Anyone’s life who lives with the person is going to be affecte any at times devestaved by NPSLE. There is so little understanding of Lupus Psychosis and NPSLE  that there needs to be an expansion in clinical and research development urgently!!! 

-Amber

Resources: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3361854/

http://www.lupus.org/research/neuropsychiatric-lupus-research-program

http://www.medicinenet.com/script/main/mobileart.asp?articlekey=21147fojovç l