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What You Need to Know About Neuropsychiatric Lupus

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From fatigue to depression to psychosis, neuropsychiatric symptoms are both a common and major issue for people with lupus and one we know very little about.

Nearly 50% of people with lupus experience some sort of brain or nervous system-related symptom related to their lupus. Despite how common it is, and despite the medical world being aware of these symptoms for over a century. Neurological symptoms are the least talked about and least understood product of lupus.

Neuropsychiatric symptoms can include:

And even the severe breaks with reality known as psychosis. You can read more about the neuropsychiatric symptoms of lupus, here.


These neuropsychiatric symptoms, when present, usually show up along with other Systemic Lupus Erythematosus (SLE) symptoms at onset or diagnosis of the disease. They don’t generally have characteristics unique to SLE. Which makes it unclear whether the cause is SLE or if it is a comorbid or co-existing issue. Because of this ambiguity, it is difficult to properly diagnose and treat neuropsychiatric symptoms of lupus as a part of lupus. Plus, everyone’s lupus is different, and not everyone has these mental symptoms, or may only have a few. 

Although it is sometimes referred to as “Neuropsychiatric Lupus Erythematosus,” there do not seem to be patterns of symptoms that could indicate a specific neuropsychiatric form of lupus, like lupus nephritis or cutaneous lupus. However, neuropsychiatric involvement is clearly linked to SLE.

Although thinking about the neuropsychiatric symptoms of lupus can be frightening, it is important to know that they can happen. Frequently misdiagnosed or brushed aside in favor of the more physical symptoms of lupus. Many people with neuropsychiatric lupus feel like they are “crazy,” and have to endure this alone. Instead, there are many people experiencing the same or similar symptoms. And we know enough about it to work through it together.


What are the Risk Factors for Neuropsychiatric Lupus?

Although everyone’s lupus experience is different, people with more severe lupus – as measured by the SLEDAI scale – had a higher rate of neuropsychiatric symptoms. In a paper looking at 1121 registered patients, where 429 (38.3%) of these people had neuropsychiatric issues, researchers found that tests revealed a link between severe lupus symptoms, positive antiphospholipid antibody tests, and no anti-dsDNA antibodies at diagnosis. ANA tests were not very good at detecting neuropsychiatric lupus, however.

Interestingly, these people also had fewer years of education under their belt. Which is also linked to worse economic situations, higher levels of stress, and worse health overall.


How does Neuropsychiatric Lupus Happen?

Part of the reason for brain and nervous system symptoms in SLE is the effect of lupus on the circulatory system. Patients with primary neuropsychiatric lupus (very severe cases) were found via magnetic resonance imaging (MRI and DS_MRI) to have lower blood flow in their brains, compared to people with secondary (less severe) neuropsychiatric symptoms and people without reported brain symptoms. When blood flow is restricted or impeded by the cardiovascular symptoms of lupus. The brain doesn’t get enough oxygen to function at its full capacity. This can lead to fatigue, headaches, sensory issues, and even the seizures sometimes seen with lupus.

SLE can also affect the brain directly. Normally, the brain and spine are protected by a barrier that restricts the entry of immune system cells. For some people, this barrier – the blood brain barrier – is more permeable and lets these cells through.


In people with lupus who have permeable or damaged blood brain barriers. Autoimmune cells (the immune system cells involved with lupus) can enter the brain and cause damage or inflammation. Resulting in these neuropsychiatric symptoms.

Grey matter and white matter, types of neurons found in the brain, are, indeed, different in people with neuropsychiatric lupus. Other neurological structures in the brain show damage or weakening – atrophy. The amount of this damage is directly related to the severity of lupus symptoms and to how quickly the neuropsychiatric symptoms show up after diagnosis.

However, a review of the brain structures of mice modeling (imitating) neuropsychiatric lupus did not reveal damage to the blood brain barrier.  Many cases of neuropsychiatric lupus may be side effects of damage or inflammation throughout the body. Or, the symptoms may actually come from a combination of factors including other organ and brain issues caused by SLE – it isn’t easy to determine.

And, in the end, most people with lupus are, understandably, more concerned with managing the symptoms affecting their immediate lives, over determining the root causes.


Treating Neuropsychiatric Lupus

No therapies specific to neuropsychiatric lupus exist, and few therapies have been tested on people with severe neuropsychiatric symptoms specifically. In fact, they are often excluded from clinical trials due to complications.

Fortunately, there is evidence that controlling the symptoms through therapy and medications and reducing lupus activity through normal lupus medications is effective in treating the neuropsychiatric aspect of SLE. Reducing inflammation in particular helps the brain and the blood brain barrier to heal and become less permeable.

However, it should be noted that antimalarial medications, which are often used for lupus, seem to have an additional protective effect on the brain.

Overall, when caught early, typically due to good communication between patient and treatment team. The prognosis for neuropsychiatric SLE can be good.

Comments (4)

4 thoughts on “What You Need to Know About Neuropsychiatric Lupus

  1. I have lesions on the white matter of the right frontal lobe. Doctor told me it is common with headache sufferers. I also have aphasia and some trouble concentrating. Migraines too. All started same time the lupus manifested itself. I am greatly improved with plaquenil, Aimovig, topiramate, venlafaxine, Celebrex, and sometimes steroids.

    1. I have been taking Topamax since well before I was diagnosed with SLE and Sjogren’s for chronic migraines and it has helped a lot with migraines (along with Botox injections every 3-4 months). I also have cervical dystonia that affects the left side of my neck and shoulder which is treated by the botox injections (dystonia is thought to possibly be an autoimmune condition as well). I do feel that my Topamax works as a mood stabilizer along with the Cymbalta I take for depression. If I go off the Topamax I find that my depression and anxiety are not as well controlled.

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