What’s Your Name Again? Effects of Lupus and Prednisone on the Brain

As I think back to all that I have gone through, since I was diagnosed with Lupus over 16 years ago, it’s almost too much to mention. But I will tell you a little about my experience after having lupus for about 10 years maybe even a bit earlier – I started to notice a significant change with my behavior.

I started experiencing, brain fog, memory loss, cognitive difficulty and dizziness. It was getting so bad that it had become noticeably to my family and friends. After doing some research and talking to my rheumatologist, I found out that these side effects might not only stem from lupus but could also be side effects from taking steroids over long period of time.

So my rheumatologist suggested that I needed to see a neurologist. My first thought was: not another specialist to add to the array of specialist that I already see…

However, I wanted to make sure that there wasn’t anything serious happing with my brain.

Lupus can attack many organs which can also affect the nervous system and brain. There are several terms doctors use to describe this: neuropsychiatric lupus (NPSLE), neurocognitive dysfunction, or central nervous system lupus (CNS lupus).

  • The central nervous system (CNS)—The brain and spinal cord.
  • The peripheral nervous system (PNS)—The network of nerves that connects the brain and spinal cord to the rest of the body, and gives skin and muscles the signals needed for sensation and movement.
  • The autonomic nervous system (ANS)—Allows communication between spinal and peripheral nerves and the brain and internal organs, and controls functions like breathing, blood flow, and heart rate.

People with lupus can experience a number of complications when their nervous system is affected. The symptoms may come on suddenly or may come and go, but they will vary depending upon the location and extent of the tissue injury. These symptoms also can be present in other diseases, so diagnosing lupus-related nervous system disorders is often difficult.

Common Symptoms

The most common lupus-related nervous system problems include:

  • seizures
  • severe depression
  • stroke

These problems usually occur at times of lupus flares in other body organs as well (such as arthritis, skin rash or kidney disease). To be sure, doctors first exclude other causes for these problems such as atherosclerosis (hardening of the blood vessels) in a patient with a stroke, and brain injury or tumor in a patient with seizures.

There are several terms doctors use to describe this: neuropsychiatric lupus (NPSLE), neurocognitive dysfunction, or central nervous system lupus (CNS lupus).

Neuropsychiatric lupus problems – I’m I going crazy?

Somewhat less common neuropsychiatric lupus problems include sudden confusion, psychosis, and neuropathy which can cause foot weakness or numbness. Mild memory problems are not unusual either. However, severe dementia is very uncommon. Finally, other more rare problems include transverse myelitis, and non-infectious meningitis. Transverse myelitis is a serious condition due to inflammation affecting the spinal cord. If untreated, it may cause bladder incontinence and paralysis of the legs.

Causes of NPSLE

How lupus causes these neuropsychiatric problems is not very clear. In many cases, it may be due to autoantibodies (antibodies that are against our own body).

Treatment Options

The treatment depends on the particular problem and its cause. Good communication with your doctor is very important for early diagnosis of the problem and effective treatment. The rheumatologist usually works together with a neurologist for the best care for the patients.

Prednisone Side Effects – I’m I going Crazy x 2 ?

Prednisone affects not just your body, but also your brain, and it can cause psychiatric side effects. Taking prednisone made me sometimes feel like a stranger in my own body. I felt like my brain and moods were no longer trustworthy.

Some of the many side effects includes

  • dizziness
  • headache
  • eye pain

Types of Psychiatric Side Effects from Prednisone

  • Mood Lability: agitation, indifference, tearfulness, irritability
  • Anxiety, restlessness, worry, fear, agitation
  • Insomnia and restlessness
  • Depression, lethargy, suicidality
  • Memory, cognitive impairments, distractibility, confusion
  • Mania, euphoria, hypomania, pressured speech
  • Psychosis, (steroid psychosis) delirium, hallucinations, disorganized thought, delusions

Try to track your symptoms and discuss them with your doctors as well. Practice healthy eating and living. Do brain exercises, and workout when you can.

The side effect of both lupus and prednisone sometimes feel like a double shot of crazy. You are damned if you do, and you are damned if you don’t.  However, workings closely with my doctors I have learned to navigate through these side effects. This of course isn’t an easy task.

2020 has been a difficult year for all of us, but having Lupus certainly hasn’t made it easier.

So, with that been said, if you feel like you need help with your mental health, don’t hesitate to talk to your healthcare provider or a therapist.

Looking forward to a restored optimal mental health and well-being in 2021.







  1. I’ve read so many articles about Lupus, spoken to friends/family and as always I’m amazed at how many layers this disease has ! Not just how it affects the physical and emotional health but, also how the most commonly used treatment steroids can add such profound mental distress. Thank you for sharing your experience Gillian and being so transparent and real about your journey.

    1. Thank you for reading it. I am glad I was able to shed some more light for you about this horrible disease

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