i have never been referred to see a rhuematologisti in the four years that I have suffered with PMR I am just under my doctor. Is anyone else in same position?
Hi susan. yes I am the same. My doctor has never even considered a referral to a rhuematologist, he simply lets me control my own treatment as I assume he knows very little about PMR. Reading some of the discussions on this forum does not tend to inspire a sufferer to consider going to a rhuemy althought some do suggest that there are good ones around, they seem to want you off medication asap even though you are still suffering.
When I first went to GP with pains I was given NSAID's.Five years later when on max dose age 45 decided to refer me to rheumatologist who diagnosed PMR after response to large steroid injection.Once treatment sorted back to GP care with referral back when necessaryAt present am back under hospital as had to come off steroids.Started methotrexate tablets but due to bad side effects have just been started on injectionsRheumatologist wants to see me in six months then yearly.Whether at some point back under GP who can say but I know a few who have never been to rheumatologistGood luck on your journey
Hi Susan, PMR can often be managed at primary level. Some people see a rheumatologist earlier on, but as time goes by unless there is a good reason to see them you are fine as you are. I did see a rheumy as I kept being told I had a virus, so I saw one privately who diagnosed PMR. If you have a doctor who knows what they are doing that is fine,
The first doctor I saw in the practice diagnosed arthritis and actualy told me when I queried him "I KNOW WHAT I'M TALKING ABOUT".
A couple of months later I went back and this time I saw another doctor who listened to my symptoms and said PMR, and he was spot on, Correct diagnosis in about a minute.
I thought..."he knows what's what so I'll stick with this one.
Rhuematologist has never been mentioned but I have complete faith the doctor and am managing my PMR to his instructions.
The one time I thought I knew better (when I tried reducing below 5mg pred) I was proved horribly wrong and him right.
susan i have never seen a rhumy either ,i recon if the gp insnt sure what the pain is he then passes it on to a rhumy. where as my gp once he was convinced it was pmr he got me sorted with pred. and helped me to drop the dose safely, where as now i am controling my own drops and he is happy with that, so hopefull i am on the right road... i have said that before lol
Why is it so many of us have difficulties trying to get below 5 mgs? I have tried 3 or 4 times this year. Now back to 7 mgs.😡
Hi Constance
i can't get below 5mg either. I'm on 6mg at mom and at the moment I am having a bit of a flare up again.
Susan,
Early on I was referred to a rhematologist who listened to my symptoms and ran a few blood tests and told me he saw nothing out of the ordinary. I was referred to another specialist who prescibred a weeks course of prednisone which TOTALLY remedied my pain! Eureka I said!! But he would give me another presciption for prednisone. Go figure.
So I did my own research which took me to this forum, and when back to my GP armed with all this information and now my GP is allowing me to do what I want to do with the prednisone. I'm at 8 mg after a year and a half and will start going down again in a few weeks.
My experience is that "we're on our own."
In Aus. PMR diagnosis made by GP in less than 10 minutes. Once the diagnosis is made the treatment is obvious so no need for other opinion or referrals. Irregular return visits to GP(s, they go on holiday) for all sorts of little things, like mild shingles and headaches and .....
If it is a straighforward case - i.e. it ticks all the boxes for signs and symptoms and responds to 15mg pred then there is no real reason to be referred unless problems crop up later.with reducing. My blood tests were never up so my then GP couldn't get his head around the idea it was anything, never mind PMR! The rheumies I saw didn't think it was PMR either - even though I responded magically to 15mg pred in 6 hours. A different GP was perfectly happy.
So really it depends on the GP - if they recognie the possibility it is easy enough to manage if they are sensible. If you stick with a GP you are very unlikely to ever be faced with the thought of trying methotrexate or another so-called steroid-sparing drug - they can only be prescribed by a specialist.
If you have a good rheumy then it can be brilliant - but if you get one with fixed ideas about PMR and how it works you can end up with problems. Ppossible GCA really should always be referred to a rheumy - GPs see it very rarely - but they aren't always perfect with that either. It's a bit luck of the draw unfortunately.
When my GP diagnosed me with PMR about 2 and a half years ago
he wanted me to go to a Rheumy for a second opinion. I did and
he was very young.....agreed that with a 92 sed rate it was PMR and
gave me a prescription for l0mg pred with directions to take one a
day. Now don't we all know now that l0mg is not enough to start.
. I went back to GP and he promptly gave me a new script for
20mg which is more in line with a starting point....Now....which one
would you want? Just cause they are supposed to be a specialist
doesn't mean they actually are one. I've been a patient with my
GP for almost l7 years and while he's not perfect I'd prefer him
anyday.
I was on 5mg for about 6 months and was convinced I was over PMR, I had no aches or pains that couldn't be put down to arthritis/age/lifestyle. My GP wasn't as sure as me but allowed me to reduce.
At 4mg I ached and at 3 mg I was in agony, I couldn't get out of bed without falling out and climbing the door. I admitted defeat and my GP put me straight up to 10mg ready to start a reduction to 5 some time in the future.
Bless him he didn't say "I told you so"
I think 5mg is probably the least most of us who are still suffering can get down to.
If you are happy with your teatment, stick with it...Rheumy`s aren`t all they are cracked up to be!.....
This forum has been the most useful of all to me, especially Eileen...and to many others....Good Luck
I was actually diagnosed by the Nurse Practioner who passed me to the GP. I was started o 40mg, he was probably covering all basess! After 3 years I had what I realise now was possibly a flare. I was very ill. The GP is insistant that PMR only lasts 18months to 2 years, so then he sent me to the Rheumy who was useless. He looked at my bloods and said the PMR had gone and my pains were arthritis. You will know as I do that the pain is totally different. I stupidly didn't question it, I think I was on about 10mgs at the time.
Anyway as everyone says, if you have a GP who will listen and allow you to manage yourself, it's probably the better bet.
PMR is definitely the 'poor relation' of Rheumatic diseases. Not sure why.
Well I guess I must be in the minority.Both my GP and West Suffolk Hospital rheumatologist and rheumatology nurses have been helpful and pleasant.My GP sees me most of the time but when there are problems (as now)I get sent back to the hospital and have never waited more than 4weeks for referral appointment to come through.So sad that so many have negative experience
So did your GP come round to the idea that PMR DOESN'T just disappear after a couple of years?
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!
Hi ;Susan, I was dx Nov. 1 and my MD said he would be glad to handle it because it might take up to 3 months to get a rheumy appt. How are you doing without a rheumy? I prefer not having to go to so many different specialists for each thing we have wrong with us, care can become so fragmented; unless of course it is a more complicated problem. What dose did you start on and how did he titrate it?
You don't get cured any faster or better just because somebody is called a specialist. In fact, if they get it wrong you're stuffed.
I am sure that my wife has some form of Sjogren's syndrom as is she. the GP suspected this was the case but the rheumy said that as the blood tests don't all add up it ain't, good bye.
So what's supposed to happen now. The GP has been put on a spot and can't realy tell the sspecialist he/she may have it wrong.
I suppose it's just like PMR.... "all in the mind" and "it will just go away"
I cannot believe someone told you "it's all in the mind "If it was a health professional they want re-education since everyone knows it is due to an overactive immune system attacking the body causing inflammation