Evidence
View commentaries on this research

This is a plain English summary of an original research article

Many people with polymyalgia rheumatica reported taking steroids for far longer than 2 years (suggested by UK guidelines). Long-term steroids can increase the risk of osteoporosis (weakened bones) and fractures. However, research found few of these people were taking medications to protect bones. The research concludes that people with polymyalgia rheumatica would benefit from a falls assessment when first diagnosed, and regular treatment reviews.

People with polymyalgia rheumatica (PMR) typically have pain and stiffness in the neck, shoulders, hips and thighs. There is no single test to diagnose the condition. Steroids are the mainstay of treatment, and can be taken alongside medications for osteoporosis (including bisphosphonates), and calcium and vitamin D supplements, to protect bones.

This research, the PMR Cohort study, encompassed several trials. One found that 40% of people with the condition reported taking steroids for 5 years, far longer than guidelines suggest. Only 1 in 4 were taking medication to protect bones.

Another finding was that people with polymyalgia rheumatica aged 65 or over, or who reported a fall when they were first diagnosed, were at increased risk of fracture. The research could help GPs and people with this condition structure their discussions and develop realistic expectations of treatment.

Further information about polymyalgia rheumatica can be found on the NHS website.

What’s the issue?

People with polymyalgia rheumatica typically have long-term pain, stiffness and inflammation. It most often affects the muscles around the neck, shoulders, hips and thighs. Most people with the condition are aged over 70 years, but some are in their 50s and 60s. It is more common in women than in men.

The cause of polymyalgia rheumatica is unknown and there is no single test for doctors to diagnose the condition.

Guidance from the National Institute for Health and Care Excellence (NICE) recommends treatment with a steroid (a glucocorticoid, usually prednisolone) and suggests this will be needed for 1-2 years. But in practice, steroids are often given for longer. Long-term steroids can increase the risk of osteoporosis (weakened bones) and fractures caused by the fragility of bones (rather than direct injury) . People with polymyalgia rheumatica are more likely to fracture a bone than are those without the condition.

To prevent fractures, people with polymyalgia rheumatica should also take calcium and vitamin D supplements to strengthen bones. Those at particularly high risk of fractures (people over 65, those who have had a fragility fracture) should also take osteoporosis treatments (such as bisphosphonates). But previous studies have shown that few people receive them.

This group of people may also need a falls assessment, to prevent falls where possible. Professionals may ask what happened in previous falls. They may check people's balance and mobility, their vision, heart rate and blood pressure, for example.

Trials within the PMR Cohort study explored the experiences of people with polymyalgia rheumatica. They looked at the treatments and therapies people took, and how often they had falls and fractures.

The NHS website has more information about polymyalgia rheumatica.

What’s new?

Researchers sent a postal survey to people recently diagnosed with polymyalgia rheumatica. Of the 652 participants who completed the first survey, most (62%) were women. The average age was 72 years. Follow-up surveys were completed by 496 people at 1 year, 446 people at 2 years and 197 people at 5 years.

The researchers explored the characteristics of the disease, the medications people took and their likelihood of fracturing bones.

Disease characteristics

The researchers asked people with polymyalgia rheumatica about their experience of the condition. As expected, they described pain and stiffness, fatigue and insomnia and an inability to carry out everyday tasks. In addition, people described stiffness that lasted all day, rather than just in the morning.

Women had worse general health than men, and worse health related to polymyalgia rheumatica.

Treatments

At the start of the study, of 652 respondents:

  • most (97%) were taking steroids (glucocorticoids)
  • fewer than half (47%) of respondents were using the recommended calcium and vitamin D supplements
  • only 1 in 4 (26%) were taking osteoporosis treatments to protect bone (including bisphosphonates, hormone-replacement therapy and strontium).

At 5 years, of 197 respondents:

  • most (90%) had taken steroids (glucocorticoids) and 2 in 5 (40%) were still taking this treatment
  • a similar proportion (43%) were taking calcium and vitamin D supplements, but these supplements were not linked to reduced risk of fracture
  • only 17% were taking osteoporosis treatments
  • many (41%) people were also using non-drug strategies such as diet, exercise, or complementary therapies.

Fractures

At the start of the study:

  • around 1 in 4 (24%) people reported falls in the previous 12 months, which is similar to others of this age
  • some (17%) people reported a fragility fracture.

A history of falls on the first survey was linked with more fractures at both 12 and 24 months. At 24 months, 10% people reported a new fracture, most of whom (79%) had reported a fracture on the first survey.

Why is this important?

The study emphasises the importance of assessing people with polymyalgia rheumatica for falls at the earliest opportunity. This gives those at high risk the opportunity to take medicines to protect bones. They may also benefit from interventions to prevent falls.

Participants in this study took steroids for longer than anticipated. GPs should be encouraged to discuss the impact of long-term steroids. Other drugs and therapies (bisphosphonates, vitamin D and calcium supplements) can reduce the risk of fractures. In this study, people reported on their own medications (and could have forgotten some). Even so, it is likely that few in this study were taking these protective medicines.

What’s next?

The researchers hope their study will help GPs recognise the symptoms and to diagnose polymyalgia rheumatica. They want to encourage GPs to consider falls assessments in people with new diagnoses. And they would like to see an increase in the use of preventive treatments for bone thinning.

The researchers hope their research will help GPs and people with polymyalgia to have more structured discussions. This will help people develop more realistic expectations about treatment and guide them towards the most effective options. Just over 40% of people also used non-drug approaches, (such as exercise, diet, and complementary therapies), despite a lack of evidence for them. The researchers would like to explore people’s reasons for using non-drug treatments. More research is needed to see whether they are helpful.

Physiotherapists are well-placed to assess and manage people’s risk of falls. But their role in polymyalgia rheumatica needs to be explored and defined more clearly.

You may be interested to read

This Alert is based on: Singh Sokhal B, and others. Fragility fractures and prescriptions of medications for osteoporosis in patients with polymyalgia rheumatica: results from the PMR Cohort Study. Rheumatology Advances in Practice 2021;5:3

The charity Versus Arthritis has information booklets on Polymyalgia rheumatica and Giant cell arteritis.

Polymyalgia Rheumatica and Giant Cell Arteritis UK (PMRGCA UK) provide information packs, a helpline (0300 111 5090), newsletters, support groups, and a web forum for people with PMR and GCA.

Further research from the PMR Cohort Study:

Muller S, and others. Characterising those with incident polymyalgia rheumatica in primary care: results from the PMR Cohort Study. Arthritis Research & Therapy 2016;18:200

Muller S, and others. Longitudinal clusters of pain and stiffness in polymyalgia rheumatica: 2-year results from the PMR Cohort Study. Rheumatology 2020;59:8

Muller S, and others. Long-term use of glucocorticoids for polymyalgia rheumatica: follow-up of the PMR Cohort Study. Rheumatology Advances in Practice 2022;6:2

Weddell J, and others. What non‑pharmacological treatments do people with polymyalgia rheumatica try: results from the PMR Cohort Study. Rheumatology International 2022;42:285–290

An earlier study on the risk of fracture: Paskins Z, and others. Risk of fracture among patients with polymyalgia rheumatica and giant cell arteritis: a population-based study. BMC Medicine 2018;16:4

Funding: This work was supported by the NIHR, the NIHR Applied Research Collaboration (ARC) West Midlands and the NIHR School for Primary Care Research. It was also supported by Arthritis Research UK.

Conflicts of Interest: The Keele University School of Medicine has received funding from Bristol Myer-Squibb for support provided by one of the authors to an unrelated study. One author is a trustee at the charity PMRGCA UK. No other conflicts of interest were declared.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.


  • Share via:
  • Print article

Comments

Study author

Before now, people diagnosed with polymyalgia rheumatica expected that they would take glucocorticoids and get better. But people are now taking glucocorticoids for far longer than anyone thought. This brings with it a host of issues, not just increased risk of fracture, but also increased risk of cataracts (poor vision) and diabetes. We’d like to see more research into both pharmacological and non-pharmacological therapies to give people more options.

We hope our research will make GPs, rheumatologists, and people with polymyalgia rheumatica aware that treatment is not always straightforward nor predictable. Our findings support shared decision making, giving people more information about their condition.

Samantha Hider, Professor of Rheumatology, Keele University 

Lived experience

I have severe osteoporosis, and am aware of the need to prevent it as far as possible. I am confident that the findings will lead to changes in practice.

I hope that in future, osteoporosis will be routinely looked for in people with polymyalgia rheumatica, and treatment given to slow its progress. Some people at greater risk of osteoporosis, such as women, may need preventive treatment.

Philippa Russell, Public Contributor, Birmingham 

Lived experience

These findings seem entirely credible. They chime with my own experience of not being monitored for borderline osteoporosis (not due to polymyalgia rheumatica) until I asked. I hope the findings will improve the lot of everyone at risk of osteoporosis because of taking steroids for other conditions.

The responsibility is with the GP to tell people about their options (pharmacological and non-pharmacological) and offer to monitor them. People have the right to take this up or not as they wish.

The study team recruited respondents from primary care, and say participants represent the population. But diversity was not reported.

Amanda Roberts, Public Contributor, Nottingham

Physiotherapist

Self-reports about medication can be unreliable. Even so, this study suggests that too few people are taking the necessary medicines, and this is increasing their risk of fracture.

The study was fairly small and I’d have liked to see the details of the survey. However, it should have an impact on medication for this condition. Prescribers need to follow guidelines. Any healthcare professional seeing people with polymyalgia rheumatica should check whether they are receiving and taking appropriate medication. If professionals believe that people are not taking appropriate treatment, they should direct them back to their prescriber to discuss their medication.

Caroline Alexander, Lead Clinical Academic for Allied Health Professionals, Imperial Healthcare NHS Trust and Professor of Practice (Musculoskeletal Physiotherapy), Imperial College London

Nurse Specialist

My role is to prevent fractures. I identify people at high risk of fragility fractures, which includes those with polymyalgia rheumatica. I educate and advise primary care and musculoskeletal staff on osteoporosis and fracture prevention.

Use of oral steroid medication increases the risk of future fracture as does falling. This research emphasises the need for everyone with polymyalgia rheumatica to be assessed for fracture risk as per the Fracture Risk Assessment Tool, FRAX. In addition, clinicians, especially GPs and specialist nurses, need to be abreast of the current national guidance and best practice advice.

Glucocorticoids act directly to suppress bone formation. Patients commencing on oral steroids should be managed as per national guidelines such as the National Osteoporosis Guideline Group’s Clinical Guideline for the Prevention and Treatment of Osteoporosis and the Scottish Intercollegiate Guidelines Network Management of Osteoporosis and the Prevention of Fragility Fractures.

Many patients will need to start taking bone protective treatments (such as oral bisphosphonates) at the same time as oral steroids, i.e., those over the age of 50 years who are starting 7.5 mg/day prednisolone or more, or equivalent, for the next 3 months. Adequate calcium and vitamin D are essential in addition to bone sparing medications.

Patients should have a falls risk assessment. More than 2 falls a year is a risk factor for fracture and increases the FRAX assessment result.

Mary Elliott, Fracture Prevention Nurse Specialist, Sussex Community NHS Trust

Back to top