I had my appointment yesterday and it went pretty much as I expected. It started out about how long I’d been on steroids and him saying my CRP levels are in the normal range so I may not have PMR! I had to stop him there and remind him how this all started nearly 8 years with sudden onset and how 15mg of steroids knocked it on the head. I also said I think we both know that raised CRP levels do indicate an infection but patient symptoms are more relevant. I was quite forceful as I felt the consultation was going down the you haven’t got PMR route as he had muted it at my last appointment. Anyway he then congratulated me for getting down to 9mg especially as I had been put on 25mg for a short period back in March when I developed shingles. He then said I think we understand each other and can speak frankly to each other and I’m happy to keep you on our books so if you have any concerns you won’t have to jump through all the steps to get another appointment. He did say that it might be that I have to stay on steroids for life but I need to get to a lower dose and would be happy if I got to 7.5mg. Obviously my own goal is to get as low as possible and eventually get off steroids altogether. At 9mg now is the lowest I’ve managed so hopefully I’ll get lower in the coming months.
Latest Rheumy appointment: I had my appointment... - PMRGCAuk
Latest Rheumy appointment
Well that was a bit of an about-turn.. pleased he saw sense Good luck with what comes next, but you can only do what your illness and body allow - but you know that after 8 years.
Take care
Sounds like a satisfactory outcome, in part due to your firm handling where necesssary. Good luck on your way down to 7.5mg. Was he saying he’d be happy with you on that level for life?
Hi, it did appear that he would be happy for me to be in 7.5mg for life. I did say I would be happier to be at 5mg or less.
Well doneGriggser! Well done for all sorts of reasons actually. Hopefully all the dreadful pain you had from shingles has now gone. You have certainly been through the mill. I have had, and for some time now, exactly as you say with your rheumatologist, mine saying I don’t have PMR whatever pain I have is from impingement and torn tendons in my shoulders and arthritis! BUT it might be Fibromyalgia! She’s said this on a number of occasions but never followed this statement with anything about how it can be managed if it is! Apparently she also reckoned my instant reaction from taking my first dose of Pred was “ psychological “! Also as our lovely previous GP used to say, that if the inflammation levels were down, then Pred was doing what is was supposed to.
Like you her latest dictat is to get down on the dose to at least 5 mgs, so that when she sees me again in about 4 months she can , from a “ clinical” point of view review things! GRRRRR!!!!!
I definitely feel and have done for some time now, completely dismissed by her and actually feel no help at all in seeing her. Much better managed by the new extremely nice lady GP.
I have just come down to 7 mgs again. Along with trying to cut out things like gluten , dairy and sugar am feeling quite a bit better than I have in a long time.
It does sound like you have got your rheumatologist on side now which must ,at last, be a comfort. Good luck over the coming months in reducing your dose. Just try not to rush things!
Hi Liz, it does that rheumatologist are all trying to say we don’t have PMR, there have been a number of posts on here about it. I find it quite insulting that she suggested it was a phycological reaction! I don’t think any of us need the rheumy’s to tell us to reduce our steroids at it’s something that’s always on our minds.I’m really pleased to read you’re feeling quite a bit better. Unfortunately I’m still suffering the after effects of shingles, with nerve damage around my right eye and forehead. The itching drives me crazy and I’m wearing sunglasses indoors all the time as the light seems to aggravate it. So not feeling great but better than I was.
Well done Griggser. You clearly don't need any more aggro or yet more battles. Shingles is a b**** and after effects don't seem to hurry away. Hope it eases soon.
I really admire you for sticking to your guns. I am glad your Rheumatologist listened and responded positively. It is weary making, doctors like results and clear cut diagnosis and predictable disease processes. It is not our fault that for some of us, we cannot provide this with PMR and even GCA/LVV. I see evidence of patient blaming on here all the time. I am grateful that my Rheumatologist both listens and explores. I think our group is at the cutting edge of properly and fully understanding PMR/GCA/LVV - especially the long term suffering that some patients experience. The charity is definitely promoting research, a higher profile and a clearer awareness. Long may that continue.
Hi Griggser, I'm so pleased that your Rheumy now 'understands' you. It's only us the patients that know the exact level of pain we're in and how we respond to the medication. I've just been diagnosed with a return of PMR following a 3.5 year remission and my bloods indicated no rise in CPR or ESR levels yet my pain said differently. Now back on steroids and the pain is now gone. Following an initial face to face appointment with my GP all subsequent appointments have been via telephone all with different GP's and guess what they all want to treat me differently. It is a little infuriating that for a condition that little is known about and therefore different clinicians treat differently, many contrary to standard treatment and procedure and even best practice it's us the patient that always seems to know nothing about how we're responding to treatment or how we feel! They need to start listening to us!
Sounds positive - at least you won't have to reinvent the wheel with someone else!!
Sorry to read that the dreaded PMR has returned. At least you know the journey you’re on, but don’t how long it will take to get there!
Hi, interesting to read your experience. My rheumatologist told me about 18 months ago that I would probably be on 5mg for life. (GCA 6 years, PMR about 3) Then a couple of weeks ago I got an appointment through and saw the registrar. He dismissed the fact I had GCA and was concentrating on the PMR. I had to go through all my medication with him as he had no idea. Luckily he had a research fellow in with him who actually asked what my job was before I retired (I was a registered nurse). He had guessed because of my responses to questions!! Then the discussion changed....and I actually came away with what I wanted...a Cortisol level and a DEXA scan. The registrar has since written to my GP recommending I stay on 5mg Pred 😄 Also, my consultant rang me the following week to see how I was and to give me my blood results. It is sometimes very frustrating talking to the medics as I am sure we all understand our condition more than them a lot of the time. I think generally, apart from the odd hiccough, I have been very lucky. I hope you manage to get down to your 5mg, slow and steady. Good luck.
Like the sound of that though - better than average!
I know 😊 I really do think I've been quite lucky compared to some on here. Yes, it took a while to get somewhere but, as I've said before, I have a great GP which really helps. I do, honestly, feel that some of us have been instrumental in providing further education for our medics!! 😂 Hope you're doing ok PMRpro x
As I mentioned yesterday my chiropractor knows more about PMR than any medic I’ve seen. He said he studied it as part of his training. Well done Griggser
What a shame that you had to fight so hard! Good for you for sticking to your guns.
Well done. My GP is the same. ‘We want you off steroids. We don’t think you have PMRit is arthritis.’
I lower the dose to quickly for GP and get a flare.
I went to my Spanish rheumatologist recently. Same thing really. I went in with a sciatic leg, crabbed my way in and sat down uncomfortably. All this she. completely ignored. She was only interested in my x ray and bone density results. she hardly looked at me. She then told me the polymialgia had gone and that I should reduce from 15mgs to 5mgs over the course of 9 weeks because I was in the osteopenia range. When I suggested that not all pmr sufferers had raised markers. She corrected me with a smile. When I asked about the leg pain, she said it’s something else and waved it off. She hardly took her eyes off the computer. She prescribed Alendronic acid of course. And sent me away for four months with a smile. I can’t believe how specialised these people are and how obsessed with figures. Like, you as a human being sat in front of her just does not exist. Sorry about the rant I just wanted to add to the discussion about rheumatologist it’s an international problem obviously about medical training.
The PMR hasn't gone - on what grounds did she correct you?
She said there were no indications of disease activity from the x rays and bone density scans. It was hard having this conversation with someone who continued talking like I was a native speaker. Oh also my blood markers have never been raised. By the way is it possible to get a video conversation with a recommended rheumatologist? Do any of them do that. I wondered if you might know. Apart from this site I’m on my own here.
The first time I saw my new Rheumatologist there was a defining moment when he stopped talking to me as if I couldn’t understand anything. It was when he asked me what my occupation had been and when I told him I was an Operations Manager. It really was as if a switch had been thrown as he talked to me completely different. I was quite forceful at that meeting as well. I had been told he was ex military and calls a spade a spade. That was fine by me as I’m the same.
Well there is a good reason for that - neither x-rays nor bone scans would show anything to do with PMR. it is a disease of soft tissues. She appears to be thinking of another disorder (I'm being kind!). There are very good PMR research groups in Spain but there seems to be a strict delineation between that level and the front line. not sure how to get in contaact with any of them.
I don't know about video consultations - some must be doing them but you need someone who does private work. What about emailing Rod Hughes and asking him if he'd do one? Ironically - he is one who lamented loudly about the NHS not allowing him to see patients f2f and who continued seeing private patients all through.
Where in Spain are you? I am in Spain too and do you have private health cover or state?
I’m in the alpujarras in Andalusia far from anywhere. No I don’t have private insurance I just pay on the nose if I need something. It seems to be the only way to get anything done now. My partner is with adlesias she can’t find anyone who is interested even in the recommended hospitals. They don’t get anything out of it so they don’t bother. The national health which I am registered with are very slow and the gps I’ve come across don’t seem very much informed especially about pmr.
I am with sanitas and the consultant I have is really good. Fortunately I was diagnosed after I had the insurance as I would not be able to move insurers now as it would be excluded as a precondition. It may be worth turning up at A & E to see if they give you a consultant appointment.
Yes I have thought of that although the nearest hospital is 90mins away. These are the problems of living in splendid isolation
It was a criterion when we bought our flat here - had to be a hospital not too far away!! My daughter in the UK lives in the ideal retirement flat in Whitby - but I am forbidden to live there as it is 45 mins on blue lights to either of the hospitals at best - winter and tourists permitting!
Of course you Make these decisions when you are in good health overnight things change
They do - but at the time we did have an incentive to have a handy hospital as we bought it to come skiing ... 
You were thinking of breakages rather than deterioration then
Well yes at the time. But we also hoped to use it for retirement and we have - maybe working in the NHS all our lives exerted a salutary effect on our thinking!
My idea of heaven is not being able to see the neighbours - but there are downsides.
Don’t you ever wish you were back in old Blighty where at least you speak the same language. My Spanish isn’t bad. I would understand if they spoke slowly but they forget about 30 seconds after you remindered them. And actually I don’t think these doctors want you involved in the equation anyway. Do you have these problems?
I speak fluent German - and live in a German-speaking region. For over 30 years I translated German to English, most of it from the medical field. My rheumy is a world name in the PMR/GCA field and even his medical predecessor whose hobby was GCA spent most of the appointment (at least 45 mins) showing me new work, discussing my views on it and downloading publications for me! The current one worked with Dasgupta in Southend so likes to keep his English up anyway but the nurses need German. I need German for all my other doctors and ancilliary HCPs.
When I first lived in a German-speaking country, nearly 40 years ago, the first thing I did was learn German as I spoke none when we got there for my husband's international exchange placement. I had small children who went through their primary school system - I had a friend who spent all her time with "ex-pats" so didn't learn German and when her marriage broke down (partly because of that) she was unable to work and the children reasonably enough didn't want to go to the UK and mess up their education. We chose to live here as German is an official language which does make things easier. Some Italian doctors here don't speak good German (officially they must do), some speak English well enough but I avoid anyone who only speaks Italian - it is my legal right after all.
Try as I might my brain isn’t up to learning enough Spanish to deal with the immense bureaucracy involved in the Spanish health system. My partner was brought up in Chile and has lived most of her adult life in Spain and is still perplexed with the medicos
Ah yes - but isn't SA Spanish and Spanish Spanish a whole different language? Proper German is fairly standard - the local dialect version is a whole other world
Well for standing up to him👋 we knos how our pain is not them,we have lived with pmr and know our own body.Wishing you well on your journey to hopefuly getting off steroids.xx
Hi Griggser, I've been on 7.5mg since August 2020 (tapered from initial diagnosis dose of 15mg in 7 weeks). My rheumatologist wants me to stay on this dose for at least 2 years. I'd be happier slowly tapering to 5mg. However, although I feel well, better than I have for several years in fact, every so often the PMR symptoms return (very mild though) to give me a gentle nudge as if to say "not yet" so I listen to my body now. If I have to remain on 7.5mg or 5mg for the rest of my days (I'm 78) and have a decent quality of life, then so be it. I've just returned from a 4k walk along a stony track. The last time I did this was about 10 years ago, and I feel fine. Thanks for posting and all the best to you.....
I wish I could say the same about my appointment Monday, my Rheumy regressed back to his previous self. Indicating I’d been on Pred for quite a long time (2 yrs, 5 mos) and it can cause necrosis of organs, bone damage (my DEXA scan is scheduled for 1/5/22), and that should be reducing 1mg/4wks. I said what I have been reading it’s reduce not more than 10 percent of current dose.
I also came back with that the length of time isn’t that long, my mom has been on 5mg for over 20 yrs and she’s now 88, my blood workups by my GP show no issues, and there are doctors who put their patients at 2-3mg dose for a year to minimize risk of flare, not to mention those that put patients at 10mg for months. I reminded him that since I’ve been following that protocol, until 10/29 I had no flares and that one was very minor such that within 3 days I was back to the current dose and made the decision to hold there for 2 weeks, having started wk 1 again toward 2.25mg on Sunday.
He decides not to argue with me and asks what prescriptions I need. I tell him 1 mg & 2.5 mg and he asks me what I need 2.5mg for and I explain I’m still taking 2.5 mg also as I taper to 2.25 mg and that I cut them in half to do the lower doses.
So, I pick up the prescriptions yesterday only 30 tabs of each when I was expecting 60 x 2.5 & 90 x 1.0 considering my next appointment isn’t until March where I may be transitioning to 1.5 mg.
He’s not the least bit happy about me going as long as (or longer) August next year in tapering toward 0. Unfortunately I’m sure my GP won’t be willing to take over the treatment from my Rheumy. Guess I going to have put together some of the later findings.
What’s the name of the Dr. (Dariputa?) who gave the video presentation. I can’f find it and I also want read up on his other papers.
Thanks
Good for you for standing up for yourself. I thought that the consultant writes to your GP who is responsible for prescribing any drugs you need. I had a similar thing and used the comments section in the online prescription ordering page to say I need more than was prescribed. What was on the script only lasted me 10 days. The GP increased the number issued with no fuss. The doc also asked me during a phone consultation if I needed anything else on my repeats and made the adjustments straight away. If your not using the online system then a phone call asking the receptionist to request your GP to increase what ever you need. Good luck 😉
Hi Boss302Fan, think the doctor you’re meaning is Professor Dasgupta based at Southend Hospital.
It’s different in the USA I think. It’s been my experience that once the GP sends you to a Specialist, the Specialist manages your prescription for that condition. They share the info with the GP, and every-time you see them you provide a list of meds / supplements you’re on.
I run the list through Drugs.com App anyway and ask my Pharmacist if she sees an issue.
The rewards of a firm approach - from the patient! Well done.
Well done you for standing your ground Griggser.
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