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Perplexing rheumie appointment!

Posted , 10 users are following.

linda17563
linda17563

Went to see rheumie yesterday after he gave me three months of starting at the beginning again to see how I respond..he put me back to 15 mg, which I started at nearly 6 years ago....he is my second opinion, and has said the two times I have seen him, this is not PMR, which he said again yesterday ("or you would have responded to the 15mg"wink he asked how I was.....pain/stiffness/blurred vision/fatigue.....I could go on.  This he said is mostly due to the Pred!....so naturally I said so what do I have then?  well, we`ll see when you are much lower.....he advocates 1mg drop per month, to which I refused to do, feeling so ill already.....and know what pain I will be in....(dropped drastically for him before and could n`t move!)  he said take 8 parecetamol a day for the pain.....I said I will be doing the very slow drop of the pred, to which he had no choice but to agree.....

?He said 50% of people are misdiagnosed with PMR at the beginning...and flares are not flares but natural pain!

He said my body had got too used to the pred, like he is with coffee!.....

?I am to see him in three months, but can ring his secretary if I`m struggling!

?I don`t think I have much of a choice, but will only take as many paracetamol as I need and not the 8 he said a day.....

?Well, I would love your thoughts on this, thank you.....especially Eileen...confused

0 likes, 28 replies

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  • Anhaga
    Anhaga linda17563

    Posted

    I just want to understand clearly.  Is this right?  You were on pred six years ago at 15 mg.  You have been attempting to reduce since then, and were put back to 15 for 3 months, which has not helped your pain?  He has no suggestions as to what your illness is if it is not PMR?  Has he run all the tests for the other possibilities?  You can find on the internet articles listing differential diagnoses for diseases which present with polymyalgia symptoms - has he ruled all of those out?  If everything has been eliminated and classic PMR appears to be the correct diagnosis, then you must be allwed to experience treatment properly - a dose of pred which alleviates your symptoms, and a very slow and careful tapering program.  

     

    • Anhaga
      Anhaga

      Posted

      allowed  -   oh for an edit button!
    • linda17563
      linda17563 Anhaga

      Posted

      Yes,  ? I was diagnosed nearly 6 years ago by a different rheumie, felt fantastic at first.(15mg)....but have always had trouble lowering.......this had gone on so long, that I was getting (and still am) terrible side affects....my doctor noticed this, but I wanted a second opnion from another rheumie....

      ?This one made me do a drastic drop at first.  (from 11mg)....1mg every week......when I got to 6mg was in so much pain I couldn`t get out of the chair....I had a blood test and the hospital sent for me because my readings had risen high (for me anyway)..he then said he didn`t think it was PMR...still no other possibility of what it might be.......so he then said....lets start as if you came to me in the beginning as a new patient with your symptoms and take 15mg, drop to 12 next month then 11mg....and then 10  ....that is where I am now...he expected me this week when I saw him to be at 9mg, but told him no...I`m in too much pain....he said you haven`t responded how my patients do, so it`s not PMR!......To which I naturally said....what is it then?....well, he said some things it could have been you wouldn`t be alive now.....but lets wait till you get down lower and see........talk about frustrated.....

      ?I am going to do a VERY slow drop because my body reacts to the slightest change.....and my quality of life is very limited.....so don`t want to make this worse....

      ?What I would like to know  please if you or Eileen can tell me is....if he dosen`t think this is PMR (and he dosen`t) can my doctor continue to prescribe Pred for me after he has written and told her as much?

      ?Thank you and everyone else for your replies.....

    • Anhaga
      Anhaga linda17563

      Posted

      Eileen will know more about this but as far as I know pred is not a restricted drug, in the sense that only specialists can prescribe it, no matter what your place of residence so your gp or family doctor should be able to prescribe it for you.  Please look at the dead slow nearly stop reduction plan and follow that - BUT ONLY WHEN YOUR SYMPTOMS ARE CONTROLLED.
    • EileenH
      EileenH linda17563

      Posted

      It isn't restricted no - but whether a GP will be willing to ignore a specialist I don't know. Mine did - or at least, a different doctor in the practice did. It very much depends and you will have to ask them. But I really wouldn't bother going back to this eejit - because he hasn't a clue and he isn't looking for anything. It is medical negligence (in my opinion at least) to leave a patient in pain like that. 

    • linda17563
      linda17563 EileenH

      Posted

      I will be lowering the dead slow method on my own, but will go to the doctor if it gets unbearable....rheumie dosen`t think he`s left me in pain....he`s offered me Paracetamol!!....

      I can just about cope until I pick up something else....then it`s just too much...like when I got pneumonia 2 weeks before Christmas....felt the lowest ever, and frightened myself....but bounced back so to speak....I have come to the conclusion it`s my pain, and I have to deal with it I suppose.........because he certainly isn`t going to help....

      ?After now seeing 2 Rheumies in nearly 6 years, I despair at the calibre of them (if that`s the right word)....maybe  ? I have just been unlucky, but like you hopefully will get the right answers and feel somewhat better.....

      Thank you again for all replies....

    • Michdonn
      Michdonn linda17563

      Posted

      Well had my appointment with my rheum the one that would not increase my Phed, till I had to I had to wheeled in, in a wheelchair. She wanted me to be 25 mg, told her I was still on 30. She was very unhappy. WHY,, didn't I do what she told me. Very easy too much pain, I was not dropping till I could walk without my cane. New tapper, stay on 30 for another 7 day, then reduce by 2 1/2 ever 7 days. Told her I give it a try. I think you have to take control!

    • EileenH
      EileenH Michdonn

      Posted

      But if you are in that much pain at 30mg - surely there has to be a query as to whether it is "just" PMR?

  • daniel08939
    daniel08939 linda17563

    Posted

    I live in an area that is reported to have excellent medical care Chapel Hill North Carolina. Duke Medical Center, UNC Medical Center, Wake Med and one of the better VA Hospitals. I have had pmr for four years and non of the rheumatoligists wants to diagnose  my illness as pmr. They are all astonded that prednisone takes me from a pathetic cripple to a 78 year old winning country club golf tournaments and leading an active life. Without the prednisone I can not do much more than sit in a chair and sleep.
    • EileenH
      EileenH Anhaga

      Posted

      Not so much updating the textbooks - they want to read one in the first place! They obviously don't read any new medical papers...

  • amkoffee
    amkoffee linda17563

    Posted

    Ooh please Linda can I have a wack at this doctor? What does he mean that the flares are just natural pain? Of course they are, our whole body is natural but it doesn't make it healthy. And it doesn't make it not PMR. I just don't think your going to get much relief from the pain pills either. You need a new Rheumatologist. I think he's got his statistics right but he understands them wrong, and that it's likely that 50% are Dx wrong or not Dx at all. Where as he's thinking the other way around. And he calls himself a doctor.

    • EileenH
      EileenH amkoffee

      Posted

      The figures I was told were that about 1 in 6 patients is later given another diagnosis - usually late onset RA nad of course GCA if PMR symptoms have been the presenting complaint for a GCA patient. And as you so rightly say - the loads of us who were told it was all in our head and not given a diagnosis of any sort...
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