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NO PMR.

Posted , 9 users are following.

flydog
flydog

I was diagnosed with pmr in Sept by 2 gp's, was started on 15mg preds, managed to reduce to 2.5mg but suffered. Had a flare up last month and had to go back up to 5mg, visited a rhumy last week for the first time and was told I did not have pmr and should not be on preds, he has instructed me to reduce them by 1mg per month finishing on the 3 July, and not to take any more, I hav'nt seen my gp yet, but are your views on his decision!!!

0 likes, 11 replies

11 Replies

  • EileenH
    EileenH flydog

    Posted

    Without knowing a LOT more about the original symptoms and your response to pred, your GP's reason for thinking it IS PMR and the rheumy's reasoning for it NOT being PMR it's difficult to say anything. It isn't uncommon for rheumies to have some hare-brained reason for it not being PMR but sometimes they are right. I also had a rheumy adamant it wasn't PMR despite text book symptoms (bar the blood markers) and equally textbook response to 15mg pred in 6 hours.

     Is this one going to investigate further once you are off pred?

    I have to say - if you were able to get from 15 to 2.5mg in 4 months it might speak against PMR but you did have to go back up a bit.

    • flydog
      flydog EileenH

      Posted

      Hi Eileen,

      In the begining I was crippled with pain, my GP prescribed 15mg and this cleared all the pain away, I have reduced gradually but had to increase when a flare up came a few times, has I said I am down to 2.5.

      The rheumy will see me mid July.

      MY GP put 2.5mg on repeat prescription, so I will have to visit her shortly to get some 1mg to reduce by 1mg per month, will keep you all informed, Max

    • LayneTX
      LayneTX flydog

      Posted

      Fly dog, are you in pain or not? Where is your pain? 

      My uncle had PMR symptoms, but doc only put him on 10 mg (due to other meds and issues he had)...several months later they discovered it was his gaulbladder and since had it removed and pains gone away. So, perhaps he didn't have PMR. 

    • flydog
      flydog LayneTX

      Posted

      Hi Layne,

      Without preds I have pain in my shoulders reaching down to below the elbows and in my hips reaching down below the knees, the only other problems I have is chronic bronchitis

    • EileenH
      EileenH flydog

      Posted

      Oh if only there were a real test for PMR! 

      As I say though flydog - what is the rheumy intending doing once you are off pred? Investigating further I hope.

      I do understand their fear of pred, I really do. But why on earth when a patient is comfortable at a pretty low dose of pred do they have to decide it isn't PMR without having seen the patient in pain?  

    • flydog
      flydog EileenH

      Posted

      Hi eileen,

      when I saw the rheumy he was very abrupt, my thoughts were that  a lowly GP should not have diagnosed my condition before him,

      After he said he would see me in July he shook my hand and turned away, I was ushered out by a nurse, what will happen in July is anyones guess, but I have no intensions of suffering while he makes his mnd up.

    • EileenH
      EileenH flydog

      Posted

      I would request to see someone else - there seems to be a large proportion of rheumatologists who should have been pathologists. There have been repeated posts about poor patient skills recently. Whilst I do appreciate that the situation in the NHS is parlous, being polite costs nothing, not even a lot of energy, and most doctors remain civil. 

      Dare I ask of what ethnic extraction he was?

    • flydog
      flydog EileenH

      Posted

      Hi eileen,

      he was a white Brit, I think he was just miffed that I had'nt been referred first rather than being diagnosed first.

    • EileenH
      EileenH flydog

      Posted

      It didn't occur to him that given the waiting lists it is quite reasonable for a GP to actually act? After all - it's been nearly 6 months hasn't it?
  • margaret22251
    margaret22251 flydog

    Posted

    Hi, I too are in the same boat as yourself, my doctot thinks i have PMR my Rhymi does not, even though i am having problem related to PMR and also are having a lot of temple pain, i am at the stage wgere i now am doen to 7mg using the dsns method of Eileens, but today i am having a ultrasound scan on my bones and muscels to see what is causing all the inflamation in my feet and ankles.

    So we shall wait and see, hope you have a good day, regards Mags.

    • flydog
      flydog margaret22251

      Posted

      Hi Margaret,

      Hope the results are favorable for you, I had a ultrasound scan last week and am waiting for the results, like you I'm hoping for a favorable outcome.

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