Living with Lupus

Lupus Psychosis and Brain Inflammation

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3-5% of people with lupus experience psychosis, a severe mental illness and break with reality caused by inflammation in the brain.

Systemic Lupus Erythematosis (SLE) is a chronic disease where a person’s immune system attacks their own cells, a process known as “autoimmunity.” SLE has the potential to inflame and cause problems in any organ in the body, including the joints, but also the kidneys, the gut, the heart… and, also, the brain.

Many people with lupus are familiar with brain fog, a condition where their thoughts feel “foggy,” “fuzzy,” and sluggish. Seizures and sensory system symptoms of lupus, such as loss of eyesight or hearing, are another result of lupus affecting the brain and nervous system. Lupus can also affect the heart and circulatory system, which changes how well blood can flow to the brain. This leads to headaches and increased risks of stroke, and also indirectly causes issues in the brain. Anxiety and depression are well-known to be caused by both the stress of lupus symptoms and the effects of lupus on the brain. You can read more about neuropsychological symptoms and lupus, here.

For 3-5% of people with lupus, however, brain symptoms manifest as psychosis, disturbances in a person’s thoughts and perceptions of the world that disconnect them from reality.

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What is Lupus Psychosis?

Lupus Psychosis is a type of psychosis, which is a general term for a collection of symptoms that include false beliefs, or delusions, and false sights, sounds, and smells, or hallucinations. Garbled or “word salad” speech, strange behaviors, and inappropriate responses to social situations can also be a part of it. A person with psychosis might also experience:

  • insomnia
  • a lack of motivation
  • withdrawal from friends and society, often as a coping mechanism

Lupus psychosis generally happens within the first three years after SLE diagnosis. While intense and awful to experience, psychosis is also very rare:

In a 2008 study in the journal of rheumatology, 485 people with lupus were studied. Of these 485 people, only 11 of the patients (2.3%) were diagnosed with lupus psychosis. Psychosis was was associated with biological markers, through blood tests or other means, activity in 90% of cases.


Psychotic episodes often occur as periods of intense symptoms, with stretches of more normal brain function in between. In many cases of lupus psychosis, these episodes can coincide with flares or with the onset of specific lupus symptoms, like skin lesions.

Antipsychotic medications are generally prescribed to reduce the frequency and intensity of the psychotic episodes. These medications can make the symptom more manageable.

In a 2008 study, all patients experiencing lupus psychosis were treated with corticosteroids. After a follow up period of an average of 155 months, most of the patients experienced a decrease or remission, of their psychosis symptoms. Few people experienced long-term psychotic symptoms.

In about 80% of cases, the psychosis abates by next time a person is assessed. This makes it a brief, extremely stressful, time in a person with lupus’ life.


How is Lupus Psychosis Treated?

The treatment for lupus psychosis is a mixture of antipsychotic medications to treat the symptoms and lupus medications to treat the cause. Corticosteroids, like prednisone, and immune system suppressing (immunosuppressant) medications will reduce the symptoms of lupus. This leads to less inflammation in the brain, which will help reduce the symptoms of psychosis. So, in most cases, not much changes in the regimen, except for the addition of antipsychotics.


Can Lupus Medications Cause Psychosis?

Psychosis is one of the neuropsychiatric manifestations of lupus, but it can also be a side effect some medications. In general, lupus psychosis is different from drug-related psychosis. Instead, it is closer to diseases like schizophrenia. These types of diseases are related to brain structure or damage and are treatable with medications.

Some medications, including prednisone have been shown to cause psychosis as a toxic side effect. However, this is a rare side effect. These treatments are more likely to do good than harm for a person with lupus. But, always speak with your lupus treatment team immediately if you are experiencing significant side effects of treatments.


How Do You Diagnose Psychosis?

A psychologist can diagnose psychosis, but close friends and family may be able to help spot the symptoms. Until getting an official diagnosis and treatment, these friends and allies can help ground people experiencing psychosis, connecting them to reality and making sure that treatment can happen safely.


A Lupus Warrior’s Takeaway

Lupus psychosis is a rare, but serious, symptom of lupus.  While it is worth keeping an eye out for, there is also hope: With medical intervention and treatment, lupus psychosis is a manageable symptom of lupus that will typically pass.

It should also be noted that psychiatric symptoms like psychosis aren’t always a direct result of lupus. The stress of living with lupus can indirectly cause or exacerbate other conditions. 

Overall, the long-term outcomes of lupus psychosis are favorable. Once the lupus symptoms are brought under control by medication, the psychosis symptoms seem to subside. This means that sticking to the lupus treatment regimen and focusing on bringing lupus symptoms down is often the best course. 

Comments (14)

14 thoughts on “Lupus Psychosis and Brain Inflammation

  1. I had a systemic MRSA infection and suffered from horrible hallucinations. I have systemic lupus and my lupus was out of control too. Once my infection finally was cleared up my hallucinations left. I don’t know what caused them but I never want to live with them again.

  2. Wonderful article. My daughter experienced this and hopefully she will be open to reading the article. I assumed that was what was going on with her, but the “professionals” don’t seem to be able to do their job and treat her as a whole person.

  3. I have been dealing with all this when i was diagnosed with lupus in 2009 i was treated with all kinds of medicine until they gave me something call diazepam and that clam my anxiety down and prednisone to keep the inflammation down i just thank God there was help to get me through

  4. I have known I have lupus for 10 years now, accompanied with blood clotting disorder secondary. This explains a lot to me! I have severe anxiety.. and I have days where I feel completely, completely lost, sometimes almost dyslexic in speech and writing. A good nights sleep and I’m back like it never happened! I’m not happy I have to deal with it, but certainly happy I’m not crazy!

  5. How can I find a doctor that can help me find out if I have this.. I have sle lupus, I was diagnosed after two strokes and seizures. I battle my mental illness for already 2 years I had no idea it could be from lupus I thought it was only due to past life experiences I’ve had..

  6. I have had Lupus and many autoimmune diseases my whole life, had chronic migraines along with dizziness blackouts. 2 TIAs along with many other things. I have complained to Docs of seeing bugs, blacks spots, hearing voices, been diagnosed with vertigo. My go blury on me.
    They just tell me listen to a radio or TV. I would love some other advice. I know am not crazy all the time. Lol! Is there any support groups in Houston tx area or doctors that specializes in this field? Thank you

  7. SLE is such a severe disease that I wish I never had. It has attacked my nervous system with painful neuropathy and guessing it’s had an impact on changing the person I am to the very core or characteristics. What makes me feel most crazy are the doctors that deny any of my symptoms they can’t actually see. So often it makes me want to just give up because each day is hard enough to endure with the pain and limitations alone.

  8. SLE is such a severe disease that I wish I never had. It has attacked my nervous system with painful neuropathy and guessing it’s had an impact on changing the person I am to the very core or characteristics. What makes me feel most crazy are the doctors that deny any of my symptoms they can’t actually see. So often it makes me want to just give up because each day is hard enough to endure with the pain and limitations alone.

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