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There is no real need to be under a rheumatologist with PMR if your GP is managing everything well and you have no problems. Patients who have PMR that is being difficult or who are atypical - young, not the usual symptoms and so on - might benefit from a rheumy appointment but my experience was not good! He wanted it to be anything except PMR despite textbook symptoms (with a few GCA ones) and a perfect response to 15mg pred: 6 hours after the first dose I walked downstairs not like a toddler and back up properly not on hands and knees. I was 52 (too young he said) and have always had normal bloods even when I couldn't walk. The second GP I saw was great - she was convinced enough and prescribed pred and allowed me to work it out myself - I spent extended periods abroad and only had appointments with her every 4 or 5 months. Now I see my GP (an ex-rheumy in fact) here in Italy every month because of other problems which need frequent prescriptions and anticoagulant therapy - the PMR is a matter of her asking "How are you?" and "Be sure you don't reduce too quickly". And blood tests for that every 6 months or so (see below).

If you are in the UK it will probably take 3 or 4 months or even more to get a consultant appointment if it isn't an emergency and they will only tell you to do what you are doing if it is working well. There is a paper from John Kirwan's group in Bristol aimed at GPs caring for PMR in the community - which he regards as normal.

"Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis by V Quick and JR Kirwan"

Most of it is easy enough to read and it is available to read/download/print if you google it - your GP may even be interested.

What does need to be checked are blood sugar levels, blood pressure and (if you are prepared to take statins if not already on them) cholesterol, all of which can be affected by pred. And while they're doing that they can do a few other things at the same time which could be of interest. I was put on statins 18 months ago and after 10 days I was almost in a wheelchair - it is beginning to be suspected that mixing PMR, pred and statins isn't always a good idea. My cardiologist was perfectly happy - yes, I have a raised cholesterol but otherwise I do not have many risk factors and it is also beginning to be suspected that reducing cholesterol doesn't make that much difference after all. I'm happy to take the risk after my experience with statins!

What you DO need to be aware of is you have a risk of GCA - and if you have any suspicious symptoms (including but not only headache, jaw pain, visual symptoms) you need to see a doctor same day - at A&E if need be but urgently.

DorsetLadyPMRGCAuk volunteer

Hi Badgergirl,

I was diagnosed with GCA nearly two years ago after losing sight in one eye by A&E staff.

My (then) GP had misdiagnosed my PMR some 18 months before, and consequently therefore not realised the significance of the obvious GCA symptoms. Long story, eventful outcome!

I did eventually see a Rheumatologist, but he wasn't interested in my GCA or PMR, he just wanted to get me off Prednisolone and give me a steroid injection for osteoarthritis! it does seem to be a matter of potluck as to the service received.

I started at 80mg, now down to 13mg, after a blip some months ago.

My current GP is much more relaxed about blood tests, his opinion is that ESR readings can be high for a variety of reasons, particularly during the winter, and are therefore not a reliable as people seem to think. His opinion is what symptoms you have, I.e. Pain, stiffness etc. He has left me to reduce at my own pace, which I am, and very slowly this time, with blood tests every 2 months instead of every month. He is the only Dr who has said to me "you know your body better than I do, so act accordingly". We haven't made another appointment, but he has said I can talk to him at any time if I'm not happy with how things are going.

I would reiterate what PMRpro says re GCA symptoms, just be aware. If you're not happy with things then speak to your GP, but I wouldn't particularly worry about seeing a Rheumatologist, their departments always seem to be overloaded. Best of luck, DorsetLady

Annodomini

Hi Badger, like you, I have never had a reference to a rheumatologist. My GP said she would refer me if there were any abnormal symptoms. That was 2 1/2 years ago. But I do think you should have had another blood test by now just to make sure that the inflammation is being kept under control by your reduced dosage. Good luck!

PatM

Care by my GP was good and there was no real reason for a referral to a specialist. However I did have regular blood tests and check ups. Once my bloods were normal they were checked 4 weeks after the next drop when I had a cold and they were slightly above normal. I was given the option to stay on the dose or drop and elected to drop. Probably a mistake as I struggled hard for a couple of weeks and then stayed put on the lower dose for 6 weeks. The GP did another blood test then which was just normal and authorised another drop followed 4 weeks later by a blood test. As this one was well into the normal range I was then placed on a three monthly blood test and check up. My GP was very good, doing a Vit D test(normal) and BP check(fine) plus asking me about my weight(no problem) and giving advice on diet and exercise plus a very slow reduction plan and advice as to when to see her again. Her reduction plan was in line with advice given on this website except that I had to stay on the last 2 doses for 6 weeks before attempting another drop of 0.5mg in each case before coming off completely. I'm now signed off. Quite honestly I don't think she bothered about how slowly I came down as long as the tests were okay, I was okay and as long as I was making some kind of effort to reduce however slowly.

I do feel that it might be best to make another appointment and have your blood checked.

suzieh in reply to PatM

I have found your post helpful. Hope you are still doing well. I was managing on 5.5mg - had been on this for about 6 weeks then pains all over started building up. Sought advice on here and have damped it down by going up to 7 mg. think I'll stay on this for a couple of weeks then try to get down again?did you have to do any of this? Any advice? My dr does listen and is really letting me judge last blood test was lower inflammation but the pains started a few days later. I do think they were related to some family stress as was the onset of my Pmr. I did try paracetamol before upping but it was not enough to feel well

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PatM in reply to suzieh

Suzieh

Sorry I was lucky enough not to have this problem. The closest I came was when I reduced to about 2mg and caught a nasty cold follwed by a UTI. My GP gave me a week's course of antibiotics and forbade any drop until 2 weeks after I had completely got over the UTI. Well once I was over the UTI I was then totally exhausted and ached all over. I booked a blood test which was a few days away but later cancelled it as I suddenly started to improve. However all of that meant that I only made 2 drops in 14 weeks which I found very disheartening. My GP said that it does get sometimes get harder to drop at the lower doses and that I was doing just fine.

Stress is a real problem. I try to keep as calm and relaxed as possible but sometimes this is just not possible particularly with an elderly Mum in a Nursing Home and a husband who has had major ongoing dental problems for the past few months. I did try not to drop if life was particularly stressful or if I had a cold but if the problems are likely to persist then it is difficult.

Just to give you hope, I am still doing well, off all drugs with my energy levels slowly but steadily improving enabling me to do so much more nowadays. Maybe not quite what I was but definately getting there.

Hope you are better soon and that your family stress has lessened.

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suzieh in reply to PatM

Thanks for your reply reassuring to me. Have had a few really nice days and I think starting to feel less pains. Have some free time this week so will try and relax more and hope this gets me over the blip.

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Badgergirl

Thanks All for your excellent advice. From what I have gathered from it I am OK to be left to my own devices with tapering but perhaps ought to make an appointment soon for another blood test. I haven't had my vit D or calcium levels checked (or a dexa scan) or blood pressure.

It is the GCA that worries me. I haven't been diagnosed with it but as I get flares of uveitis, which cause pain in and around the eye and blurred vision, plus a painful TMJ problem, it would be difficult for me to know whether or not I have GCA symptoms. I have the Quick and Kirwan paper (indeed very easy to read) so will read it again for GCA symptoms.

Thanks again!