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Blood test show clear! But everything points to PMR

Posted , 9 users are following.

tony92243
tony92243

Hi all, couple of weeks ago saw doctor with agonising stiffness and pain, doctor thinks it's PMR. Put on 40 mg per day of steroids, pain and stiffness gone in hours.

I'm right age , symptoms text book and the steroid treatment worked dramatically as the doctor described. My blood test has come back clear ( nothing to confirm PMR). The Doctor did say blood tests don't always show PMR, I still feel his DX was right as all the indicators/ symptoms are text book as stated. What do you think re blood test confirmation (or lack of it) ?

0 likes, 11 replies

11 Replies

  • lodgerUK_NE
    lodgerUK_NE tony92243

    Posted

    Go to the pinned section by following this link  

    http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316 then follow the link to North East website or go directly to the BSR website and read and download the Diagnosis and Treatment of Polymyalgia Rheumatica.  This will bring you up to speed.

    It is not unusual for some people never to have raised ESR and/or CRP rates.  If all other exclusion test where done and nothing else worked. Its PMR.  The response to pred confirms it, however 40mg was a very big starting dose, normally it is 15-20mg.

    • tony92243
      tony92243 lodgerUK_NE

      Posted

      Hi Lodger, many thanks for the info. The 40 mg was because he was hedging his bets against GCA initially, am tapering down now, on 30 mg currently so far no pain return!
  • ptolemy
    ptolemy tony92243

    Posted

    Hi Tony, around twenty per cent do not have raised blood tests showing inflammation. You may be one of them. It does not mean you do not have PMR.  40mg is a very high initial dose of pred. Normally the starting dose is 15 mg sometimes 20mg unless GCA is suspected. Was this the case? PMR reacts very well to the lower doses which is often a good sign that it is PMR. The trouble is other things can also react well to a high dose of pred and so you may be misdiagnosed.
    • tony92243
      tony92243 ptolemy

      Posted

      Hi Ptolemy, yes you are right, my doctor I did think , was hedging his bets initially between GCA and PMR . When I initially presented I was in such pain I couldn't answer some of his questions so his DX was either way as was worried re the dangers of GCA.

      I have just started tapering down now and am on 30 mg, so far no pain return.

    • ptolemy
      ptolemy tony92243

      Posted

      Tony good luck with the reduction. Don't overdo it.
    • FlipDover_Aust
      FlipDover_Aust ptolemy

      Posted

      I wouldn't say that 15mg is the 'normal' starting dose - it seems to depend more on your Dr. I was started on 50mg and reduced rapidly.
  • Danrower
    Danrower tony92243

    Posted

    Tony, I am one of the sero-negative PMR folks. Was denied treatment with prednisone from an incompetent rheumatologist, who relied soley on blood tests. Forced the issue with my GP, and ba da bing, miracle, rapid relief with 15 mg. pred. I tapered relatively quickly from 15, to get to my proper dosage which is 6 mg after 18 months.  Interestingly, one of the diagonistic criteria for PMR is rapid relief from symptoms with LOW dose prednisone. 15 mg. I would ask your Doc about your 40 mg dose, that's GCA league dosage. Most of us here have a love/hate relation with the pred, and are actively trying to take the least amount possible using prudent taper mechanisms. Lots of good info here on tapering and flares. Good luck.
    • tony92243
      tony92243 Danrower

      Posted

      Hi Danrower, many thanks, Think the high dosage was I believe my GP hedging his bets between GCA and PMR, I was in such pain initially that I couldn't really satisfy his DX for PMR and he was worried re the GCA dangers. I am tapering down now and am on 30 mg coming down again in couple of weeks, so far no pain return, going to see GP again soon , so will see where things go!
  • firemom31
    firemom31 tony92243

    Posted

    I had the same situation, except my ESR was slightly above normal, and also placed on 40 mg of pred by my neurologist. That was on June 25, and I am still on 40 mg because any attempt at reduction has caused agonizing pain and a complete inability to function. I am suffering the side effects of the pred, but can't tolerate the pain without it. Neuro sent me to a rheumatologist, who drew tons of labs. I just got the results in my email yesterday, and I tested positive for rheumatoid arthritis. I will be seeing the rheum next week to see what the next step is. Moral of the story - make sure they check everything, because it shouldn't take 40 mg to control the paiin of PMR. 
    • tony92243
      tony92243 firemom31

      Posted

      Hi firemom, thx for the reply and sharing your experience. The 40 mg starter was I think because He was hedging his bets between PMA and GCA? I have started Tapering down and am down to 30 mg per day. So far ( it's only been a day) no pain return. I am due to see my GP soon so will see where he takes things, will also be further on re tapering down.

      I hope you get sorted out with you RA diagnosis and best of luck for the future.

    • lodgerUK_NE
      lodgerUK_NE tony92243

      Posted

      I now understand why your GP put you on 40mg.  He was unsure whether it was GCA or PMR. Give yourself at least five day when you drop to see if you feel OK after that drop.
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