Polymyalgia rheumatica (PMR) may not be as self-limiting as traditionally thought, according to research from a cohort at the Austin Hospital.

The research, presented recently at ARA 2021, comprised a retrospective study of 180 patients who attended the Austin PMR clinic since its inception in 2016 to February 2020.

The study found most patients had PMR (65%), some were confirmed as giant cell arteritis (6.1%), both PMR and GCA (5.6%), and others had alternate diagnosis (23.3%).

The average duration of symptoms until time of diagnosis was 12 weeks in those diagnosed as PMR and 44 weeks in those with alternate diagnosis.

Speaking to the limbic after the meeting, lead author Dr Georgia Harris said PMR was often a diagnostic challenge for clinicians.

“It has lots of mimics and patients can present with really non-specific symptoms of stiffness, pain, fatigue and more.”

Dr Harris, an intern in the rheumatology department at the Austin Hospital, said PMR was traditionally described as a self-limiting condition and treated with prednisolone.

“We found 65% of patients with PMR had at least one relapse of their disease, which is quite a significant number, and 35% and 17% went on to have two or three relapses [respectively],” she said.

“Some patients had a really uncomplicated course – were diagnosed easily, responded really well to steroids, were able to be weaned off and had no relapses – and then some patients had really dramatic, ‘other end of the scale’ severe disease where it was really hard to get them off the prednisolone and required multiple agents.”

“It speaks to the challenge of treating this condition. The main treatment is with glucocorticoids which have a lot of side effects and so we tried to wean patients off it but in weaning people down over months can often lead to relapses which is a real challenge in treating this disease.”

Dr Harris said patients who relapsed multiple times were often commenced on a DMARD (27%) and sometimes more than one DMARD (17.6%).

“In some patients, that is something people have to go to to spare them from long term steroid side effects.

#Posterwatch A couple of neat posters from @georgiakharris @jlyleung from the Austin PMR clinic. Loving a focus on the patient experience @CreakyJointsAus, hoping we can do better in this tricky and under-researched disease #2021ARAASM #PMR #patientexperience pic.twitter.com/BJlSEzJkeX

— ARA Early Career Group (@earlyARA) May 23, 2021

She said a qualitative study of the patient experience found the long time to diagnosis was frustrating for patients. Equally, patients were keen for an alternative therapy than steroids.

“One of my questions was asking about what patients thought had triggered their disease. There is a hypotheses that perhaps a virus could trigger it, that it might be seasonal, some patients put it down to stress…. there are a few hypotheses but nothing really validated.”

“There is lots of scope for future research,” she said.

She noted that patients also talked about unexpected symptoms.

“Patients talked a lot about fatigue, sleep disturbance and memory issues and this is a condition where we traditionally think in terms of pain and stiffness.”

“So I think it’s a timely reminder to think about the patient as a whole when treating this disease and to address other impacts in their life that are important to patients.”

She said there was room to improve the visibility and understanding of PMR, especially in the community.

Dr Harris was supervised by rheumatologist Dr Jessica Leung with senior investigator Associate Professor Russell Buchanan.