Referral to a rhuematologist

I think PMR is the poor relation because many rheumies feel it is beneath them to deal with late middle-aged women who are also menopausal and who don't have what they perceive to be a serious illness, it's just a few aches and pains. Since the perception is that it only appears in people over 70 (I know, I know but there are many doctors who ignore the symptoms because "you aren't old enough"!) we are not part of the working population so of little economic interest. Thi will change of course as pension age rises but already it is becomming more common to have younger patients - there are quite a few in their 40s on the forums. There are far more I believe - labelled with fibromyalgia, depression, somatacism and whatever else. Including hysteria and attention-seeking...

Some of the really good GPs and rheumies published a paper last year where they had interiewed a load of PMR patients in Yorkshire about their experiences with it: "“I suddenly felt I’d aged”: A qualitative study of patient experiences of polymyalgia rheumatica (PMR)".  Unfortunately it isn't "free to air" to read - it's a hoot, you can hear the Yorkshire in the quotes! - but here is the Abstract and stuff:

"Highlights:

• The 5 main themes were: pain, stiffness and weakness, disability, treatment and disease course, experience of care and psychological impact.

•  Some aspects of patients’ experiences challenge conventional understanding of PMR.

•  A conceptual framework was developed from the interlinked themes and subthemes which will be used to develop a patient reported outcome measure for PMR.

Abstract:

Objectives

To explore patient experiences of living with, and receiving treatment for, PMR.

Methods

Semi-structured qualitative interviews, with 22 patients with PMR recruited from general practices in South Yorkshire. Thematic analysis using a constant comparative method, ran concurrently with the interviews and was used to derive a conceptual framework.

Results

5 Key themes emerged highlighting the importance of:

(1) pain, stiffness and weakness,

(2) disability,

(3) treatment and disease course,

(4) experience of care,

(5) psychological impact of PMR.

Patients emphasised the profound disability experienced that was often associated with fear and vulnerability, highlighting how this was often not recognised by health care professionals.

Patients’ experiences also challenge medical convention, particularly around the concept of ‘weakness’ as a symptom, the use of morning stiffness as a measure of disease activity and the myth of full resolution of symptoms with steroid treatment.

Treatment decisions were complex, with patients balancing glucocorticoid side effects against persistent symptoms.

Conclusions

Patients often described their experience of PMR in terms of disability rather than focussing on localised symptoms. The associated psychological impact was significant.

Practice implications

Recognising this is key to achieving shared understanding, reaching the correct diagnosis promptly, and formulating a patient-centred management plan."

Some of us had already said much of this to one of the UK research groups in video conferences and they were surprised - now they are seeing the feelings are general. The doctors have one image of PMR and what it does to us, and we have a very different one.

We are getting through to some of them and it is being spread around the world because patients are being involved in one of the really big approachs via OMERACT, Outcome Measures in Rheumatology. "It is an independent initiative of international health professionals interested in outcome measures in rheumatology. Through a data driven multi-stakeholder consensus process, OMERACT strives to identify and improve relevant health outcome domains, endorsing valid, responsive, feasible health outcome measures in patients with musculoskeletal conditions. An important aspect of OMERACT is the integration of patients at each stage of the OMERACT process. This patient input along with clinical trialist insight, epidemiologist assessment, and industry perspective, has led OMERACT to be a unique decision making group in developing outcome measures for all types of clinical trials and observational research. Consensus conferences take place every two years, with locations alternating between North America, Europe, and Asia-Pacific."

The next meeting is next May, in Whistler, the last one was in Budapest in 2014. Patients are actively involved via their associated group and their voices are being heard - the delegates get an opportunity to speak as equals. I gather it is a VERY hard work 5 days!

The relevance to this conversation is that there were layers of people trained/educated to different levels. Which meant the barriers were relatively small.

My view of what's happening in Eileen's description is that someone has decided to talk to the shop floor, the patients. The outcome is inevitable.

I sometimes wonder at the relative absence of roles between gps and patients. We expect the gps to be good diagnosticians as well as managing treatment and I suspect they are two very different skills. Particularly with increasing incidence of chronic conditions.

I noticed it most with an interventionist orthopod. Very good mechanic, did the op and fixed the problem. Absolutely no idea about the after effects or impact or 5 years for 90% recovery.

However, I was working in a block of flats last year where a retired GP lived and when he heard that I have PMR he advised me that brisk exercise was the answer, and unfortunately, he was serious.

What we call a Pillock of society 

Brisk exercise, eh? When you can barely get across the room? I'm a nasty person underneath - hope he develops it sometime! 

I was wondering if you are aware of any side effects of pred causing urinary frequency, or any bowel problems?  I know we are all different and some experience uncommon effects.  Thanks! 

What sort of bowel problems? What other medication are you on? For one, PPIs can lead to severe bowel problems.

Hmm - sounds as if it might be an interaction. What exactly are you taking?

Sorry about your terrible experience with Cipro, and I was aware of that possible problem.  I will refuse it in the future.

I feel the best I've felt in 4 months, no pain, some mild hand cramping, happy (wow!), good mood! Energetic!