Survival and associated comorbidities in inclusion body myositis

Elie Naddaf, Shahar Shelly, Jay Mandrekar, Alanna M. Chamberlain, E. Matthew Hoffman, Floranne C. Ernste, Teerin Liewluck

Research output: Contribution to journalArticlepeer-review


Objective: To evaluate survival and associated comorbidities in inclusion body myositis (IBM) in a population-based, case-control study. Methods: We utilized the expanded Rochester Epidemiology Project medical records-linkage system, including 27 counties in Minnesota and Wisconsin, to identify patients with IBM, other inflammatory myopathies (IIM), and age/sex-matched population-controls. We compared the frequency of various comorbidities and survival among groups. Results: We identified 50 IBM patients, 65 IIM controls and 294 population controls. Dysphagia was most common in IBM (64%) patients. The frequency of neurodegenerative disorders (dementia/parkinsonism) and solid cancers was not different between groups. Rheumatoid arthritis was the most common rheumatic disease in all groups. A total of 36% of IBM patients had a peripheral neuropathy, 6% had Sjögren's syndrome and 10% had a haematologic malignancy. T-cell large granular lymphocytic leukaemia was only observed in the IBM group. None of the IBM patients had hepatitis B or C, or HIV. IBM patients were 2.7 times more likely to have peripheral neuropathy, 6.2 times more likely to have Sjögren's syndrome and 3.9 times more likely to have a haematologic malignancy than population controls. IBM was associated with increased mortality, with a 10-year survival of 36% from index, compared with 67% in IIM and 59% in population controls. Respiratory failure or pneumonia (44%) was the most common cause of death. Conclusions: IBM is associated with lower survival, and higher frequency of peripheral neuropathy, Sjögren's syndrome and haematologic malignancies than the general population. Close monitoring of IBM-related complications is warranted.

Original languageEnglish (US)
Pages (from-to)2016-2024
Number of pages9
JournalRheumatology (United Kingdom)
Issue number5
StatePublished - May 1 2022


  • Sjögren's syndrome
  • case-control study
  • inclusion body myositis
  • large granular lymphocytic leukemia
  • peripheral neuropathy

ASJC Scopus subject areas

  • Rheumatology
  • Pharmacology (medical)


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