Myth: There is only one single set of symptoms and treatment path for PMR
Another point raised in our patient group was how some individuals’ symptoms differed from text book symptoms. Their symptoms weren’t dramatically different, but it might be that the order in which the symptoms appeared made it difficult to diagnose PMR initially. For example, in some cases, stiffness and pain in the shoulders and hips initially started on one side of the body before spreading to both sides.
We’ve discussed the ‘two-year myth‘ previously, so this is more of a reminder that treatment, including length of treatment, is individual because people are individuals.
PMR causes bilateral stiffness and pain in the shoulders and hips (typically worse in the morning and improving during the day) and can also cause additional symptoms of fatigue, night sweats, weight loss, loss of appetite and fever.
However, the order and speed in which people can develop symptoms and how they experience those symptoms will vary from person to person.
Patients typically have raised ESR (erythrocyte sedimentation rate) and CRP (C-reactive protein) markers but in a small number of cases, the ESR may be normal. The CRP is almost always raised.
Starting dose and dose adjustments
Steroid treatment is the foundation of treatment for PMR. Initial doses tend to be fairly uniform, but this often has to be adjusted in the early days depending on how well the dose works and whether it is causing side-effects. Some patients with quite mild PMR can have their steroids via intermittent injection which means they have less steroid exposure overall. (explained further in guidelines linked to below). Most patients, however, really need steroid tablets to treat what can be very disabling symptoms.
There is no “one size fits all” on how to taper steroids in PMR. The steroid taper given on common GP reference websites like the NICE CKS website (not a NICE guideline) is a starting-point only. NICE CKS says “smaller dose reductions and longer durations at each dose may be needed to avoid relapses in some people.” In other words, the taper has to be adjusted depending on the individual patient and their own course of PMR so far. Guidelines produced by rheumatology organisations such as BSR and ACR also emphasise the need to individualise steroid treatment.
Additional therapies to protect bones
Steroids can increase the risk of bone fractures. Some patients with PMR need more intensive therapy to protect their bones from the effects of steroids. There are now many more treatment options than there used to be. DEXA tests can be useful to help determine which treatment option is best for a patient.
Additional therapies (DMARDs) for patients who relapse during steroid taper
Rheumatology guidelines, especially the 2015 ACR/EULAR guidelines, also recommend the use of extra treatments (conventional synthetic DMARDs primarily methotrexate) but not all patients are offered this extra treatment in practice. In America the biologic DMARD, sarilumab, is now FDA-approved for some patients with PMR, but not for every patient. Guidelines have not yet been updated to reflect this.
The role of rheumatology
A rheumatologist has more clinical experience in PMR than a GP, and can often provide very helpful advice on the various treatment options especially if the treatment options offered by the GP are not meeting the patient’s needs.
BSR guidelines – 2010
ACR/EULAR guidelines – 2015