I think if anyone ever has problems regarding their treatment and has to 'argue' or debate with their specialist or doctor about its appropriateness or individual suitability ' then we should just refer them to the 'primary recommendations' of this 2015 paper on Treatment Guidelines for PMR - where it clearly states:
'These
recommendations are intended for the management of patients with PMR in various settings and are based on
clinical evidence and expert opinion including informed patient decision-making'.
and where it also states:
'Treatment of PMR patients should aim at the best care and must be based on a shared decision between the patient and the treating physician.
and :
'Patients should have an individualized PMR management plan. Patient perspective and preferences should be considered in the individualized
choice of initial GC dose and subsequent tapering of GCs in PMR. '
It is regrettable then that although this some of the most up to date research clearly refers to the importance of informed patient input and very importantly - subjective personal experience of PMR - that there are still some medicos who seem unable to 'listen' to their patients. I think being 'listened to' is VITAL for all of us and our experiences, insights, and the information we have acquired should be taken seriously and at least given reasonable consideration.
I am fortunate I do have a reasonable doctor who has listened (and learned) and regards medicine as much of an 'art' as a 'science' - but I realise from this and other forums -for many others this has not been the case and this has only added to any stresses they have. While the relationship we have with those who have 'power and control' over the administration of medical treatments is evolving - especially in this digital age - seems we still have a way to go - in the meantime we can cite back this kind of useful information/recommendations from their own 'hierarchies'.
Just saying .....
All the best to everyone
Rimmy
Written by
Rimmy
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Individual suitability and individualized PMR plan are something my specialist doesn't seem to grasp..he seems to think every patient has the exact same symptoms..if you don't..he's reluctant to to say for sure PMR is what I have..even though I had it 5 yrs. ago( different Dr.and clinic).My blood tests read the same as before..plus I had to have a biopsy for GCA.
Very many thanks for posting this info and link. I shall look forward to using it, as I yet again try to explain why I can't reduce in line with the guidelines' expectations! You are absolutely right that all this just creates extra stress, at a time when it's important to be as calm, relaxed and positive as possible.
My experience of quoting guidelines has been mixed! One sneered that it is "only a guideline" and they were made to be ignored! It is blatantly obvious from some therapeutic approaches that they haven't even looked up what PMR is, never mind how to manage it best.
I quote this reference at least 3 or 4 times a week on the various forums - and it is part of a thread on the patient.info site as a reading list:
and some of the other links are worth printing out and pushing under a GP nose. Rheumies are usually even more arrogant about what they "know" - except sometimes they don't!
I attended the OMERACT rheumatology meeting in Whistler last year - 10% of the delegates are patients, funded to attend. All the decisions being made are voted on - and it is acknowledged that the patients know a lot more about living with the disease than the doctors so there is a move afoot to give the patient vote double the value in future. Our role is to develop outcome measures for various therapies - on the basis of what is really important to patients rather than the figures. We had some lively discussions about the use of steroids and I met doctors who did change their attitudes after hearing from expert patients. Would there were more!
Also just thinking PMRpro about how 'selective' and incongruous some medicos are regarding 'subjectivity' - ie: ('some' - and I am just saying to be fair - 'some') seem to quite casually manage to disregard scientific and peer reviewed 'evidence' - which is what 'guidelines' are apparently derived from AND yet at the same time also dismiss the comments and perceptions of patients as 'too' subjective - not informed - or as not founded in the 'science'. I don't get how they can have it BOTH ways at once !!? But I guess as we've talked about here and elsewhere before - 'science' involves human beings who 'sometimes' don't conform to its ideal precepts.
They'll do it all ways round if it fits their preconceptions!
I was slated by a former GP who had PMR for advocating Bowen therapy. "you might as well dance naked under the moon" - and for their trouble got 35+ responses from the people on here to HAVE had some relief. I don't care if it is dodgy physiology (not that dodgy actually) - if people can afford it and it helps relive some of their pain or leaves them feeling more relaxed then it is worth it. It has no side effects and you know quite quickly if it is going to make any difference to you - most GPs will just write a prescription for pain-killers, including opiods. Thanks, but no thanks...
Hi Rimmy, there was an article in the BMJ the other day saying doctors should interact with patients more. I notice on the articles now they put a note on how much patient input was used. Sadly most of them are zilch, but it is a start.
Yes there seems to be some increasing recognition - as demonstrated in the brochure posted by Sambucca (below) and in PMRpro's interesting comments above. This makes me more hopeful - although there is clearly still a long way to go to meet these important objectives.
I have just read this week's BMJ (British Medical Journal) and after your last post made more of a check on patient involvement. It really does seem to be improving.
What an excellent brochure - I hadn't seen this before- and LOVE that it says 'we' are meant to be the 'leaders of our medical team' !! As it also says -VERY applicable for any chronic illness - and basically about having a good relationship with doctors in almost any context - THANKS sambucca !
When you followed that link took you to the PMR&GCAuk North East Support, Charity Reg No 1138409.
We produce those Newsletters and distribute the hard copies to our members and other Medics with whom we have good relationships.
After those hard copies are distributed we put them on our website as the postage to UK, Canada and Europe is too costly, this means people who have paid, but waive their right to hard copies (postage costs high) or perhaps have bought some of the items from our website. get something in return. Anyone can read and/or download. Although we are small and run on a shoestring, like other support groups and the two other charities, with whom we have close links, we think this is fair.
If you have the time, look back at them and you will find articles by PMRpro, Researchers and where they are up too and other bits and pieces you might just find useful.
The next Newsletter is out early July and I think you will be interested in the contents of it
Thank you on behalf of the Trustees for taking the time out to let us know what you thought of the article. It is much appreciated.
I have a new doctor. My usual " trained" one is off sick!
I have an unknown UTI which I have good reason to believe has been caused by taking Krill oil whilst I have RA and taking magnesium. This is documented online after the FDA did tests to find outbtye cause of the UTI.
I told my new doctor, as you do!, She said she didn't believe that nonsense!!
Angry doesn't describe me. She is a fool!
I just know that on Friday she will tell me to reduce Pred quicker! I just know that I will decline her kind suggestion!
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COVID and/or vaccine-induced PMR
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