The latest INSPIRE research suggests that some neuropsychiatric (NP) symptoms may be more likely to be directly caused by SLE than previously thought. Treatments for SLE may help with some NP symptoms in some cases. There may be a lot of variation between individuals, so it’s important that there is more time given in appointments to discussing NP symptoms so that patients and doctors can work together to make sense of a patient’s symptoms.

What are neuropsychiatric symptoms?

“Neuropsychiatric” (NP) symptoms refers to symptoms that involve the brain, the nervous system, or mental health. That means the term “NP symptoms” covers a wide range, including dizziness, headaches, tremors, anxiety, low mood, hallucinations, and seizures. Fatigue, one of the most commonly reported symptoms of lupus, may also be considered an NP symptom in some cases.

What is the INSPIRE study?

INSPIRE is a project investigating NP symptoms in lupus and similar conditions, comparing the experiences and views of patients and healthcare professionals. There are a series of different studies as part of the INSPIRE project. You can read about INSPIRE’s previous studies here:
• An investigation of how common NP symptoms are in conditions like lupus
• What evidence doctors use to diagnose NP symptoms in lupus

LUPUS UK has contributed funding to the INSPIRE project.

What was this study trying to find out?

There are lots of different views on whether different NP symptoms are caused by the lupus directly or by something else, like medication side effects or the difficulties of living with a chronic illness. This is called “attribution” of symptoms, and is important because there can be different treatments depending on what is causing the symptoms.

This study looked at different kinds of evidence from patients to try and work out how likely it is that different NP symptoms could be attributed to lupus directly.

What did this study do?

The researchers collected different kinds of evidence by using surveys and interviews with people with SLE and from healthcare professionals involved in their care. To help them work out whether a symptom may be due to lupus directly or due to the difficulties of living with a chronic condition (indirectly), they compared the results from people with SLE to results from people with inflammatory arthritis (IA). Doctors they spoke to felt that IA would be a good comparison as they thought it was a chronic condition with a similar level of indirectly caused NP symptoms, but with less directly caused NP symptoms. Higher levels of a symptom in SLE than in IA could then suggest it was caused by the lupus itself.

The evidence they collected included:
• How often people experienced different NP symptoms.
• Whether taking corticosteroids for their lupus had any impact on those symptoms.
• Whether NP symptoms happened at the same time as other SLE symptoms.

What did they find out?

Their main findings were:

• People with SLE experienced a wider range of NP symptoms than people with IA or without an inflammatory condition.

• Interviews with people with SLE and those with IA suggested that both conditions caused a similar level of NP symptoms caused by the difficulties of living with a chronic illness. This suggests that the higher levels of NP symptoms in SLE might be attributed directly to the lupus.

• Fatigue, hallucinations, feelings of unreality, and severe headache were rated as the symptoms most responsive to corticosteroid treatment. This may suggest that they may be more likely to be directly caused by the lupus. However, it is complicated for some symptoms due to the side effects of medication. For example, some people get a temporary increase in energy when taking steroids, which may be the reason fatigue improves.

• Fatigue, very low mood, and cognitive dysfunction were rated as the NP symptoms most likely to happen at the same time as other signs of a flare of SLE.

• Doctors and patients both reported that it was difficult to explore and untangle the causes of NP symptoms in appointments as there wasn’t enough time, or the time needed to be given to symptoms which were more clearly related to the lupus.

• When the researchers looked at all the different pieces of evidence together, it was difficult to say for certain if particular NP symptoms were directly caused by the lupus as the evidence didn’t always agree. The findings suggested that hallucinations and severe headache were the NP symptoms most directly attributable to lupus itself.

What were the conclusions and recommendations?

The researchers suggest that some common NP symptoms, such as severe headaches, may be more attributable to SLE itself than previously thought. They also suggested that existing immunosuppressive treatments may help with some NP symptoms, and this could be looked at in further research or trials. However, doctors have to consider a balance in any risk of harm or side effects from treatment, the possible benefits, and the uncertainty about whether a symptom is directly caused by lupus.

The researchers also suggest that there can be variation between individual people in which NP symptoms may be more likely to be directly caused by their lupus. They said that there needs to be more time in appointments given to NP symptoms, so that doctors and patients can work together to make sense of whether an NP symptom may be directly caused by SLE for that individual patient.

What happens next?

The INSPIRE team is continuing to study NP symptoms in lupus and other systemic autoimmune rheumatic diseases.

You can read the full scientific paper of this study on the journal’s website here.