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Frustrated at rheumatologist

Posted , 14 users are following.

amkoffee
amkoffee

Well I'm sitting in waiting room waiting to get blood work. Just saw my rheumatologist. I tried to talk to her about the slow tapering method and even showed it to her. All she had to say was that she wants me off of prednisone as soon as possible. I pointed out to her that twice now I have had pain when I got to 10 mg. She said that I shouldn't blame all pain on PMR! I told her that there was no doubt that the pain I had was PMR pain because within hours of upping my prednisone the pain had began to subside. So she finally said I could do it my way, but then said she didn't know how to prescribe my prednisone. I told her I had enough at this time and if I needed more is would have the pharmacy call her. Then I told her I found out I was prediabetice. To which she said that's another reason to get you off the prednisone as quick as possible. Oh and she is going to up my methotrexate too which I told her is making my tongue sore. But she said she will also up my folic acid too. I don't want to be on prednisone either. But damn I don't like the pain either.

0 likes, 42 replies

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  • 1951grumpa
    1951grumpa amkoffee

    Posted

    My GP says similar things. As he's leaving the room he looks at me an says " have her get you off the prednisone " My rheumatologist is managing my PMR. I am very happy with her, she called him and went over my lack of progress. I've had PMR since 2011. It wasn't until I gave my GP a paper I found at the NIH referencing a 2008 Itiallian PMR study that said that PMR wasn't a benign condition as thought and that 30 percent of patients are still on steroids over six years. So hang in there and I hope you can get to the right dr.

    • EileenH
      EileenH 1951grumpa

      Posted

      Do you have the reference - that Italian study would be very useful! I've had PMR for over 12 years - doesn't affect me much really but I have a good relationship with pred! And two very sensible doctors: "You need what you need..."

    • Anhaga
      Anhaga 1951grumpa

      Posted

      Were you able to read the complete text - I just found the abstract.  Six years!  Eeep.  Not what I planned!   eek

    • 1951grumpa
      1951grumpa EileenH

      Posted

      Hello Eileen, if you put in a web search- Long-term follow-up of polymyalgia rheumatica patients treated with methotrexate and steroids. the article should come up .

      The one that takes you to the NIH is the abstract, the one that takes you to the Club Exp Rheumatol article has the whole article. I hope this helps. I also found a lot of information at the NIH site that was informative.

      I also have a good rheumatologist, Im so glad my GP sent me to her! George

    • EileenH
      EileenH 1951grumpa

      Posted

      Thank you!

      I haven't read the whole paper before - but it is the one that shows that taking methotrexate does NOT change the incidence of pred-related side effects. So - if taking slightly less pred plus MTX doesn't change that despite allowing a lower dose of pred - what's the point of adding another layer of medication?????????/

    • mimi1950
      mimi1950 EileenH

      Posted

      I so agree, Eileen.. The old rheumi thinks I'm on the mtx he prescribed and tried to convince me that it would allow me to taper 25% and in one week another 30%!

      Don't these people read up on stuff about their own speciality?

    • EileenH
      EileenH mimi1950

      Posted

      He obviously has no idea does he!

      I have this theory that the belief in the 2 year recovery from PMR is because many of his sort tell patients to reduce at silly rates and tell patients it is their fault/OA/fibromyalgia when the pain comes back so they vote with their feet and don't go back. So the doctor believes they are cured/it wasn't PMR. 

    • ptolemy
      ptolemy EileenH

      Posted

      I think you are right about the two year theory. I was talking to someone today whose 83 year old mother has recently been diagnosed with PMR. She said that her mother was in awful pain. It turned out she had taken pred for six months and had reduced from 20mg to 7mg. Of course the doctor did not have a clue of the pain as the lady thought that is what happened and so she did not mention it. She will presumably reduce to zero in the two years and will probably still be in agony. 
    • BettyE
      BettyE mimi1950

      Posted

       [color=#3a2e28]Don't these people read up on stuff about their own speciality?

      Well, some do, some don't and it's not just medics, is it. Graduating with a precious scroll is just the beginning.

      My excellent GP once said, having suggested something unusual ( taking pred at night ) that worked for me, " I'll remember that for future referance" I could have hugged him and he's not at all cuddly.[/color]

       

    • 1951grumpa
      1951grumpa BettyE

      Posted

      Here in the U.S. the Dr's practice medicine. Some live up to the bill.😂

    • EileenH
      EileenH 1951grumpa

      Posted

      Not only in the USA - but you'd think that eventually practise would make perfect!

    • mimi1950
      mimi1950 EileenH

      Posted

      It is true that health care workers in Spain are not obligated to do continuing education in order to keep their licenses valid and they get 10 minutes to see a new patient and 5 for subsequent visits, plus they are the lowest paid in Europe, if not the world. Not much motivation to fo a better job, I guess. The silver lining, though, is that no doctor here will prescribe any unnecessary treatment for personal gain, something that happens often in the US and which I have experienced personally.
    • EileenH
      EileenH mimi1950

      Posted

      Much the same in the UK I suppose - although they are identifying cases of fraudulent declaration of diagnoses in Germany so the doctors get better reimbursement from the healthcare insurers. Mixing private concepts with state care is fraught with problems...
  • sharon35553
    sharon35553 amkoffee

    Posted

    My Dr, and I have seen three all agree with yours, get off of the pred but like you when I was at 20 mil I was fine, still they wanted me down and look at me now, in agony. Im going tomorrow for the blood work and if its all normal Im not sure what they will do because to be in so much pain and have nothing show out of the ordinary makes the Dr.s all think its something else, yet again if I take more pred the pain goes away so Im so confused.
    • EileenH
      EileenH sharon35553

      Posted

      I've replied some of this somewhere else - about 1 in 5 patients with GCA has normal blood markers, once patients are on pred the markers are even less likely to rise even if there are still symptoms. In GCA you often need a higher dose of pred to get the inflammation under control and stop the pain. But if enough pred improves the pain symptoms it is a sign there is inflammation being caused somewhere. There are other things besides GCA that could cause similar pain but they are mostly inflammatory and pred will also help. But if the symptoms match GCA and pred helps - that is another confirmation.

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