Rhuemy before & after care very poor

Probably ranting a little but I just find The approach of Rhuemayoligists towards PMR sufferers very frustrating . I saw my Rhuemy the first time 4 months ago pleasant chap , I had already been on Pred for 4 months prior to seeing him so was already reducing , he told me on that occasion to get down to 10mg before the recent appointment from 15 mg seemed OK . When I went the other day for my appointment it was a different Rhuemy I had never seen before , I walk in he didn't introduce himself , he tells me the computer is down so he can't see my notes , then he says are you taking any medication , I nearly fell of my chair what a joke I waited 4 months for that, after 1 or 2 questions , he said see you in 6 months , try to get as low on the Pred as you can , I have a phone number that can take up to a week to return a call as they always go to answering machine , think I should have stayed with my GP at least he is available when needed . Any one else have these kind of Rhuemy problems or have I just picked a bad apple . This forum is like having a Rhuemy on hand 24/7, so much experience on here you usually find the answer's to your questions . Down to 8mg now doing half a mg a fortnight fingers crossed , staying positive

12 Replies

  • Look on the bright side, at least he didn't tell you to come off them completely, which happened to someone else!

    The 'new' doctors are being stuffed full of clinical knowledge but it's a shame that they don't teach them bedside (or surgery-side) manners too.

  • Dead right polka dot , I feel like I have managed this condition myself up to now with the help of the good people on this site . My GP was very considerate and understanding when I was first diagnosed , unfortunately his knowledge of the illness was very poor he said that himself . All the same it was him that put me on Pred , so far play to him .

  • Unfortunately, there seem to be a lot of bad apples about! I'm sure there are many good ones as well, but they don't get mentioned as much.

    I saw one, six months after I been diagnosed with GCA - which he couldn't disagree with, as I'd already lost sight of right eye! When I explained the symptoms prior to diagnosis and asked, for my information, if I'd had PMR (my GP thought frozen shoulder), his response was a shrug of the shoulders and "maybe, but even if you had, it would be gone by now".

    He did arrange a MRI scan for my shoulder, and when OA proved, he also offered to give me steroid injections in that shoulder, as "he was much more experienced than the GP in giving them, so they work better!" No interest in managing GCA.

    I decided overall to stick with GP (even though she hadn't diagnosed the problem!) and myself managing, so haven't been back since! At least the GP was willing to learn and did listen to what I had to say.

  • Yes - I met 2 rheumies during the 5 years I had PMR before it was diagnosed - both had appalling patient relationship techniques. Which perhaps I wouldn't have found so offensive had the first not been a colleague of my husband! I could only think "poor Joe Public". The other had his own ideas and wasn't interested in the response in 6 hours to 15mg pred. The second visit, still with no diagnosis, was a repeat of the examination and questions from the first and then the doctor said I don't know, I'll have to get the boss..." That was when I discovered this second one was a "GP with a special interest". Well thanks - I could have had that level of expertise in the practice around the corner without traipsing 15 miles to another town.

    I'd had a similar experience with one of the GPs in the practice too - until he had seen me in the hospital mid-week lecture with my name badge and white coat after which he was actually quite friendly. Bless him - I always say he should have been a pathologist!

    Whatever - write it off to experience and ask nicely to stick with your GP. Then you can educate him for the next PMR patient.

    In fairness though - there are some outstanding rheumies around the country but they do seem to be in a minority. There are even PMR expert GPs in the Sheffield area who write research papers!

  • Interesting pmrpro , if I get any symptoms that I am worried about or can't explain , this is my first port of call, then the GP, then the Rhuemy , which should be complete reverse , such is life thanks for the replys all

  • I coped well enough with an efficient and knowledgeable GP until a year ago when my CRP stubbornly remained above normal; so he decided to send me to a rheumy which is where I hit the jackpot. She agreed with my reduction plans and ordered tests to see if there was anything else going on; and she arranged for me to have annual infusions of Zolendronic Acid since I have a bit of osteoporosis.

  • I am on my 4th Rheumatologist by choice.......enough said?

  • Oh dear Suzy , hope I can avioid that path , the stress these Rhuemys cause , stay positive

  • It really does seem to be a game of chance as to which Rheumy you get. My original one was very good - she diagnosed me correctly even though I didn't have (and never have had) raised inflammation markers. When we moved out of the area I was really sorry to leave her and was afraid that I'd be out of luck with the second but not so. He's just as good and I'm grateful!

  • That was lucky polka

  • I finally got to see a rheumatologist a couple of week ago after a 3 month wait, which since my gp referring me I'd started suffering with hip/groin pain that does not feel like pmr at all and doesn't respond to pred that I'd upped back up to 20mg....after being examined by the registrar , asked all the questions he said he needed to speak to the consultant , when he came in his first words where ' it's impossible for you to have pmr, your are to young'....as you said , no introduction , nothing, when I asked what he thought it could be I was basically told best case bones crumbling , worst case bone cancer! No reassurance just that I needed an urgent mri, which I'm still waiting to have, will be a month since my appointment when I do. Worst was that he wants my pred stopped for when I'm next for blood tests there which means I'm having to go from 20 to 0 in just 4 week, his parting words were to say he understood dropping my pred would mean an increase in pain but I'd just have to 'put up with it!' so my first rhumey experience wasn't a very good one at all...

  • I am shocked. You were treated very badly. You may or may not have something serious, and the least he could do is show some compassion, especially as you will have to wait a few weeks to find out anything more. I do hope he is wrong about the possibilities, or at the very least it turns out to be something very treatable and you make a swift recovery. Hugs. 💕

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