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Reconsidering, retiring the controversial ‘lupus headache’
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SAN DIEGO — Although “lupus headache” remains a disease-related entity in the Systemic Lupus Erythematosus Disease Activity Index, debate persists over the lack of a detailed definition for this type of headache and whether it represents a neuropsychiatric symptom of lupus, according to a presentation at the 2019 Congress of Clinical Rheumatology West.
“What is ‘lupus headache’? I’m not sure I know,” John G. Hanly, MD, FRCPC, of the Queen Elizabeth II Health Sciences Centre and Dalhousie University, in Halifax, Nova Scotia, Canada, told attendees. “One definition, taken from the SLEDAI-2K, describes it a ‘severe, persistent headache. Maybe migrainous, but must be non-responsive to narcotic analgesia.’ I don’t think that is a particularly impressive definition for a unique type of headache, but these are the types of definitions that have been used to identify this entity.”
In their 2013 study of 1,732 patients with SLE, Hanly and colleagues determined that, although headache was reported by 17.8% of patients at the time of enrollment, only 1.5% exhibited “lupus headache” using the criteria of “severe, persistent, and nonresponsive” to treatment, even with narcotic analgesics.
“When we looked at those patients who were identified to have a ‘lupus headache’ in the context of their SLEDAI score, it was an incredibly rare event — 1.5% of patients,” Hanly said. “In fact, if you looked at the total number of events, it was less than 0.5%.”
Hanly noted that the American College of Rheumatology case definitions of neuropsychiatric syndromes do not necessarily define “lupus headache,” but rather propose several headache disorders based on the International Headache Society (IHS) classification.
“If there was a unique type of headache related to lupus, then we would expect symptoms to cluster under one of the predictor subsets of the IHS classification,” Hanly said. “But, in fact, it didn’t – it was all over the map with migraines, tension headaches, intractable non-specific headaches, cluster headaches and intracranial hypertension.”
Hanly noted that when they first published their study examining “lupus headache,” Michael D. Lockshin, MD, from Weill Cornell Medical College, published an accompanying editorial, in which he concluded that this criterion “no longer seems to serve a useful purpose. It is time for it to be discarded — completely split off, so to speak — from SLEDAI-2K.”
“This is an issue not without controversy, but I am in the Lockshin camp on this one,” Hanly said. “I think we really have to rethink the notion that there is a headache so unique that we call it a ‘lupus headache.’” – by Robert Stott
Reference:- Hanly JG. Nervous system disease in systemic lupus erythematosus: Current status and future directions. Presented at: Congress of Clinical Rheumatology West; September 26-29, 2019; San Diego.
- Hanly JG, et al. Arthritis Rheum. 2013. doi:10.1002/art.38106.
- Lockshin M. Arthritis Rheum. 2013. doi:10.1002/art/38108.
Disclosure: Hanly reports no relevant financial disclosures.