My Rheumy Appointment

I have had PMR since last June and my GP started me on 5mg which seemed to work had bad headache so went up to 8 by her instructions.

Went to Rheumy clinic for first time yesterday and was disappointed to get junior doctor. After asking me lots of questions she said to reduce by 1mg per month and come completely off asap. When I said about maintenance dose but was told I don't need it. After reading on here about so many people having flares I am sure it is too soon to do that as I can't be so lucky for it not to come back.

She was surprised my GP started me on only 5mg but at least it worked.

What do others think please I am thinking of going to different GP in practice

23 Replies

  • Hi Rosie,

    Must admit that a starting dose of 5mg is very low, did your GP explain why? Sorry that's probably a silly question! perhaps she wasn't sure it was PMR. Do you feel okay at 8mg?

    If your Rheumy was inexperienced she may not have seen many PMR patients, and doesn't fully understand the nature of the beast - it has to be treated a bit differently to other illnesses - arthritis etc.

    If you feel ok, you could try reducing, but I would go by 0.5mg stages, and make sure you feel alright before you step down again. Sometimes any symptoms take a bit longer to appear, so don't keep reducing relentlessly. You must keep stable at each reduction.

    It might be wise to get another GPs opinion, after all they all have their own views on how to treat different complaints.

  • Really only 5mg and only 8mg in response to a headache in a PMR patient?

    I would go back to the GP and discuss it all in depth. Why did they decide it was PMR? Why then did they ignore all the guidelines and review articles and only start you on 5mg? Why did they say 8mg for headache appearing (it's such a random amount)? And when you went to the rheumatology clinic as a new patient - why were seen by only a junior and not at least a registrar and preferably a consultant until you had a proper investigation and diagnosis?

    Until you are told that the diagnosis of PMR is incorrect then the junior doctor's advice is, at best, poor. You may be able to get to a lower dose, maybe the 5mg would be enough again, and if you can get lower without symptoms returning then that is a good thing. It may not be PMR - or it may already have gone into remission, it does happen. But the JD's advice if it is PMR flies in the face of all experience.

    If your current GP can't answer this all to your satisfaction then find one with a bit more nouse!

  • Thanks for your reply. I was disappointed at not seeing a senior doctor but they are a law unto themselves. I have made an appointment to see another GP next month and maybe get some answers then. I am taking 6mg at the moment and have some pain. It seems to come and go depending if I have had a busy day

  • Managing your symptoms isn't only the pred - it is also managing your activities to avoid the things that make it worse. The pred is only relieving the inflammation - acting as a pain-killer in many ways. Your muscles remain intolerant of acute exercise and will remind you of that if you try to do too much. Do things in smaller bites and rest/do something using other muscles in between. Busy days and PMR never mix well!

  • I agree with teh above based on my experience. Follow your gut instinct. I went back to my GP, discussed my doubts and how I felt about my first rheumy appointment which left me feeling confused and angry and requested a different rheumy. They're not infallible and they don't always get it right. Keep calm, prepare your thoughts and questions, write them down and make sure they answer them and don't fob you off.

  • Iv been having to reduce my pred dramatically on consultants orders, I finally had my rhumey appointment beginning of January , he insisted I was too young for pmr so wanted me off pred for blood tests, he had said he wanted me back in a months time but I will be nearer 2 by the time I'm back next week, which I suppose is better because it's given me more time to reduce , I wasn't feeling too bad until I got down to 4, now I'm on 2 and everything is back to how it was in the beginning , im dreading going to 1 even more so Monday when I'll be taking none!! in 6/7 week iv dropped from 20 to 0, Im convinced I do have pmr but with his attitude I'm not sure what he'll tell me to do next, my gp really doesn't seem to have a clue either, I wish I felt will enough to hunt round for one that actually understands

  • Whereabouts are you? Maybe someone could recommend someone close enough to get to.

    I really do get fed up with hearing "you're too young" - it doesn't appear much in under 40s because they refuse to see it even when it is under their noses. I wonder if it will ever change.

  • Hi

    Poor you I was diagnosed in Aug 16 started on 15 and only manage to get down to 11 at present.

    However I gave it to my GP straight told him I was extremely unhappy with his misdiagnoses and I had to fight for the PMR diagnoses.

    Since then he is all smiles ask me what I want to do reduces at my pace and keeps me supplied with a variety of strengths of preds so I can reduce as I wish.

    It may be worth considering tackling your GP if you feel brave enough.

    I must admit I was all fired up that day and did let rip, which although I have to stand up for others in my job role. I usually let things ride when its something for me .

    Best Wishes Rose

  • I, like PMRpro and others think, am also fed up of doctors saying 'you're too young'! It's been proved wrong by 'young' people before! Does annoy me. Is there another gp at your surgery you could see? Don't reckon having any less dosage sounds good idea at mo!

  • I'm from Nottinghamshire , iv lived in blissful ignorance for the past year, gp said polymyalgia, said take steroids for a few month until it basically goes !! My fault I know but I believed in him , it's only since the consultants reaction that iv looked into it further , iv learned more from this group than from any doctor, how my gp explained it was the muscles around my joints had hardened therefore the joints were struggling against them, that was it! ....when I read about autoimmune disease on here ,and how well everything has been explained , well I couldn't believe how he'd misinformed me

  • If you are anywhere near Kings Mill hospital I have a quite good rheumy called Maria Aldeira she listens and understands PMR. Don't take any notice of what they say about KIngs Mill its not the hospital's fault it's the PFI payments that cause the problems

  • I know we often complain doctors don't explain - but when you see an explanation like that you think it is probably better!

    "my gp explained it was the muscles around my joints had hardened therefore the joints were struggling against them" - what a patronising load of old cobblers!

    I despair - given that GPs are the doorkeepers of the NHS you'd think they might be taught some communications skills!

  • What on earth can we do about the ignorance of these doctors?

    How much more pain and suffering do we have to endure as a result. it makes my blood boil!!!

    I am only getting sensible treatment at the moment because after weeks of battling happened to book an another appointment and happened to hit on a doctor whose mother had had PMR. I live in fear of what would happen if this doctor would leave or go off sick. As it is he has reduced hours to delay burn out so I have to book appointments weeks ahead.

    The only thing I can suggest is to print out the guidelines for diagnosis, suggested steroid dose, and possible reduction schedule. (I'm sure PMR Pro will give you the link!)

    It assumes doctor ignorance - but what if they don't like it! These days they have to accept that patients will do their own research especially if they are not providing you with accurate information and adequate treatment. It is your body, your pain and you need fixing! You shouldn't be asked to reduce your steroid dose if your PMR is not controlled which it clearly isn't.

    Sorry about this fume! Stick to your guns and the best of luck.

  • Well funny you should mention our gp's not liking our doing our own research , iv actually put a complaint in to the practice manager about how I was spoken too last time I had a telephone consultation , I was only needing a lower dose pred but as it wasn't in a repeat prescription I had to have a call back, it wasn't my usual gp, not that he's much knowledge on pmr but at least he does try and has manners , I happened to mention a couple of things I'd learnt on here and explained that I'd joined your group and said how helpful and understanding you all were , I heard a few sighs and tuts but then I said I'd asked the advice of a pharmacist about a new tablet I'm taking, I work in a post office next to a pharmacy so it's very convenient for small queries I may have , he snapped at me asking 'just how many people do you want to listen to!!!'....then actually put the phone down on me....his bedside manner definitely needs practice !

  • Un-be-liev-able !!! Don't think his bedside manner would ever improve by the sounds of it!! :-)

  • That's a disgrace and I'm glad you complained. You are correct to ask the pharmacist if you have a query about you medication. In any case it would seem some of these doctors have a poor understanding of dosage and taper rate for managing PMR inflamation. The pharmacist might well understand the implications of reducing steroid too quickly. Perhaps rudeness by the GP a symptom of insecurity/lack of understanding. If the medic was up to speed he wouldn't mind a second opinion. They need to accept that patients with nouse will research their problems. I told my GP 1in 5 people with PMR didn't show inflamation markers - he had had only had 2 patients in his career - but given my problems with his coleagues refusing to diagnose,I wonder how many others had gone undiagnosed on the grounds of no inflamation markers. He accepted my word - good man! feel very lucky but it shouldn't be a matter of luck should it?

  • I think GPs at present are on a knife-edge. Over 6000 GP practices have closed in the UK in the last few years and haven't been replaced - there are not enough with money to set up their own practices, others are employed in private industry clinics. They are working too long hours with too little time to see each of their patients - the result is they are making poor decisions, are snappy and feel threatened by everyone. Especially the "expert patient" armed with a bit more info and background knowledge than they have. They also assume this is one of those message boards like Facebook - not the front of a respectable charity.

    Contrast that with my last GP consultation - I was seen the same day I wanted (it's turn up and wait, Tuesday btw), I was with her for a good 3/4 hour and it would have been longer had I needed it, everything was dealt with including an appointment for an urgent visit to the local hospital's Head of Medicine on Thursday (yes, the same week). After I saw him for 20-30 mins, I immediately had an ECG and chest x-ray done. Blood was taken on Friday morning - and the important result was handed to me at 3pm. On Monday I saw him for the confirmation of what we suspected - not heart failure, probably due to a flare of the PMR. And I was with him for over 3/4 hour. No rush, no panic, no "you've had your 10 mins, come back another day for the rest". Just a discussion about the management of PMR and a set of new papers including the latest guidelines from October 2015, printed off for me to take away.

    Oh yes - and an insistence that I take at least until the summer to get back to the lower doses of pred. No suggestion that "you've been on this stuff for 6 years, get off it asap as it's far too dangerous" - that way he said, lies trouble.

  • Eileen, you mention "a set of new papers including the latest guidelines from October 2015." Any chance of sharing? It sounds like you are fortunate enough to have the sort of medical care and attention we all dream about.


    is available free-to-air and may well be something to print off to waft under a doctor's nose. It's heavy reading and for obvious reasons does assume a lot of basic knowledge.

    These others are review articles and not easily available as they are behind paywalls - it will depend on your local library access as to whether you can get them to read though you can read the abstracts.

    Even here it isn't perfect and I'm sure I got special treatment as he recognised an "expert patient" who expects to be involved in her management - and he doesn't feel threatened by me. neither does my GP with whom I'm on first name terms. But I said to someone else on another forum - doctors who trained in Germanic medical schools seem a bit different these days. There used to be a great "I'm the expert, don't question me" , no different from the UK, but one of the things they seemed to be taught quite early in their specialist training is "listen to the patient - because THEY are the expert on THEIR disease". Only I know how I am affected - they need to find out.

    Germans are a bit anal about their health - and there are some fantastic health programmes on the various regional TV channels. Always with the named Head of whatever with the hospital name also up for grabs, films of surgery, up close and in full technicolour. And follow-up phone-ins. Is this maybe one of the positive aspects of partially privatised state medicine?

  • that seems very low to start on, docs started me on 15mg and that didnt work for me went up to 20mg, for about a month, my bloods are doing well now so im slowly coming down of the preds now reducing every two weeks, my doctors have been brilliant i got to be fare,

  • And this is the NHS that is supposed to be the envy of the world?

    If your G.P. didn't think you had PMR why send you to the Rheumatology clinic?

    Why were you seen there by someone who could not explain/did not know why she was setting a particular course of treatment..?

    My G.P. Is pretty good at handing out life style advice but advice on how to cope with a chronic illness or pain is non-existent. What are they learning in medical school?

  • "What are they learning in medical school?" - it is getting better. At least one medical school has PMR/GCA patients who go in to speak to the doctors in training - and the charity was looking for more who would participate in a similar scheme. It's a bit far from here but I'd cheerfully travel the country to do it if I was still in the UK.

    What does happen is that they emerge from medical school still believing they can heal the world - when they discover that it ain't so it is a nasty shock. If they can't cure us - and that equates to getting us off medication - they've failed. They don't see management as a success.

    I commented to someone who made that claim about "the envy of the world" or the "best in the world" on FB the other day - the whole of mainland Europe has systems that are equally good and equally affordable. Part of the problem with the NHS now is the blinkered insistence on "free". I have a few small co-pays, I'm exempt for some things and GP and in-patient care is totally free at point of service. If our income (from whatever source) were low, we'd be fully exempt. No-one here falls through the gaps unless they want to and our medics know they are valued which doesn't appear to be the case in the UK currently. But oh was I shouted down - I think there is a bit of Little Britainism...

  • My gp refererred me because he decided that as my pmr wasn't responding quick enough to pred, he'd planned to have me off in about 6 month, originally told me that I'd be over it n back to normal within a year!! for the consultant the only course of treatment was to stop pred completely within a month.

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