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At last rheumatologist appointment

Posted , 8 users are following.

kathleen21605
kathleen21605

I went at last to see rheumatologist after a year of waiting she tells me I don't have pmr but severe osteoarthritis. I feel really let down as I have been taking steroids for that year unnecessary she says it will take a long time at a reduction of 1mg every 3 months . I had more blood tests plus xrays on the same day but next appointment is not for 3 months. Any ideas from you knowledgeable people.

0 likes, 13 replies

13 Replies

  • Reeceregan
    Reeceregan kathleen21605

    Posted

    Bummer! That’s enough to rock you’re boat sideways! What tests did she base her diagnosis on may I ask? And where are you...as in America, UK, etc. I swear if I wasn on the downward end of PMR/GCA and tapering down on prednisone I’d change my rheumatologist because I’ve learnt more on this forum than I have from him over the last 14 months and he still doesn’t seem to know much about these two diseases but an aweful lot about all the differest “arthritis’s”  I swear I’ve taught him more than he’s taught me!
    • kathleen21605
      kathleen21605 Reeceregan

      Posted

      I live in UK and it was the Dr that diagnosed the pmr and prescribed the steroids. Rheumatologist said because there was only pain in left arm ,shoulder and neck it wasn't pmr. She said my inflammation levels were not high enough either I think the highest I had was44 esr. Just have to go with what you are told. I will be pleased to get off steroids as since taking them my health has gone downhill with all the side effects and other things. Thank you for your concern.

    • EileenH
      EileenH kathleen21605

      Posted

      One in five patients with PMR never have ANY raised blood markers - and 44 is pretty high (by modern considerations at least). But as you say - not a lot you can do unless your GP is more broad mindedand the x-rays show the rheumy to be wrong. Do let us know what happens though.
    • kathleen21605
      kathleen21605 EileenH

      Posted

      I will certainly let you know how things go you have all been like friends to me on the forum as I said learnt more from you than any Dr.
    • Kdemers
      Kdemers EileenH

      Posted

      Right on Eileen!  My R. Doctor says he never really considers blood markers. it helps if there are some but it isn't the only way to judge.  He listens to the patient and or the relief from Prednisone.  CRP is a fairly good marker but not always valid.  I wish you luck Kathleen

    • ptolemy
      ptolemy Kdemers

      Posted

      My rheumie has the same attitude. If it hurts, to hell with the markers! I seem to have high markers all the time sometimes I feel fine sometimes I don’t. It does seem a bit crazy to refuse people an increase in pred when they are in pain but the blood markers do not move and also vice versa.
  • EileenH
    EileenH kathleen21605

    Posted

    Until I saw the evidence of the OA I would reserve judgement. I was also told by a rheumatologist I had OA, she "could feel it" in both knee and hands (no x-rays). After eventually starting pred a few years later it went and hasn't returned. I had an x-ray done a few weeks ago of the same knee which was painful when walking down slopes or downstairs. The report says no evidence of anything - including OA. That is after the best part of 14 years. In the meantime, the sore knee has disappeared!!!

    Either it wasn't OA or pred for nearly 9 years has cured it...

    • kathleen21605
      kathleen21605 EileenH

      Posted

      Thank you will take your advice as have learnt more on here than from any Dr.Now wait for results of xrays and blood tests I had done the same day as Rheumatologist appointment, next app. in 3months.
  • ptolemy
    ptolemy kathleen21605

    Posted

    Did the pred help the pain? If so it was worth taking. What dose are you on now? I would have thought if it is confirmed you do not need it any more you could reduce by 1mg a month rather than every three months.
    • kathleen21605
      kathleen21605 ptolemy

      Posted

      Still had pain in neck and lower back I am on 9mg and I would have thought a quicker reduction. I had days when it was bad also ones no so bad. Didn't go altogether. On first diagnosis I thought it was miracle cure as all pain went but back within couple of weeks. Now wait for all the results of tests.

    • Anhaga
      Anhaga kathleen21605

      Posted

      I have fairly extensive osteoarthritis and I have to say at 15 mg, and for some time after as I tapered, all my aches an pains went away, not just the PMR.  Now at 2 mg OA is very definitely back in the picture, and has been for a while, although I don't really know when it became such a factor.  I'd almost say it's worse now than it was before treatment for PMR but I suspect that's just perspective, having enjoyed a good many months with no or very little pain. 

    • kathleen21605
      kathleen21605 Anhaga

      Posted

      I think the osteoarthritis is worse now than before I took steroids. In January I went to a meeting at my surgery with 5 Drs and 2 Rheumatologists they asked me to explain how I felt. I said felt worse taking steroids and wanted to come off. As it happened nothing came of this and I didn't get any help either so now after the first and only visit to the Rheumatologist I have to take notice of her,not much choice really.

    • Anhaga
      Anhaga kathleen21605

      Posted

      Of course, as we get reminded every once in a while, we are also, unfortunately, getting older.....eek
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