Prevalence and Characterization of Pain as a Symptom Amongst Sporadic Inclusion Body Myositis (sIBM) Patients (P3.4-005)

Objective: To determine the prevalence of pain and to characterize this symptom in patients with sporadic inclusion body myositis (sIBM). Background: sIBM is the most common inflammatory myopathy in individuals over the age of 50 years, and the most important myopathy associated with ageing. It typically presents with progressive quadriceps muscle more than hip flexor weakness leading to falls or difficulty standing, and finger flexor weakness leading to loss of dexterity. Pain has been an underrecognized symptom of this disease, confounded by age-related comorbidities that can produce pain, such as cardiovascular disease, osteoarthritis, degenerative disc disease, neuropathies, chronic use of opioids, among others. The progressive nature of sIBM and the lack of effective treatments call for a better understanding of symptoms that impact patient’s quality of life, as can be seen with pain. Design/Methods: A 14-item survey was developed on Google Forms. The questions will measure: time from diagnosis of sIBM, presence of pain as a pre-existing symptom prior to diagnosis of sIBM, presence of pain and duration as a symptom of sIBM, interference of pain with daily activities and sleep; presence and localization of numbness, tingling and electric shock sensations; management of pain, including opioid use and other medications. The survey will be sent to the 2,000 patients diagnosed with sIBM who are registered with The Myositis Association. The survey will be open for 30 days. Results: Results of this study to follow after the survey responses are collected and analyzed. Conclusions: Characterization of pain as a symptom of sIBM will aid in further understanding the natural history of the disease and perhaps serve as a clinical marker of severity or rate of progression in this patient population. Equally important, it will help improve the quality of medical care provided and patient satisfaction. Disclosure: Dr. Said-Said has nothing to disclose. Dr. Mathew has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Ionis Pharmaceuticals, Inc. Dr. Shah has received research support from Pfizer Pharmaceuticals, Inc. Dr. Goyal has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with CSL Behring. Dr. Kak has nothing to disclose. Dr. Habib has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Soleo Health. Dr. Mozaffar has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Amicus, Alexion, CSL and Genzyme. Dr. Mozaffar has received research support from Alexion, Amicus, aTyr, Genzyme, Grifols, Idera, Ionis Pharmaceuticals, and Ultragenyx.