Frustrated by my rheum

Posted , 6 users are following.

Hello PMR peeps,

My rheum wanted me off pred at my December appt that was cancelled. By my new appt in March I had pushed and got down to zero (only a few days before). She said "your numbers were good in December, you should have been off the pred then". I said that I was still in pain. And she said "I gave you the Meloxican for breakthrough pain, it's probably arthritis and I don't want you self medicating on pred". I said that I don't want more drugs. Here's the problem, before my appt I was doing great on 1mg, then I went to 1/2 for a week, then to zero. A few days later, the pain returned in my thighs and upper arms so I started taking 1mg which before had worked for me and now it isn't. Should I wait a few days to see if it kicks in or go up to 2mg. Oh, and my rheum said that I was fine now and she doesn't need to see me any more. 

0 likes, 12 replies

12 Replies

  • Posted

    Maybe you're lucky she doesn't want to see you any more?  Could your GP manage your pred prescription from now on?

    • Posted

      Yes, if I need more pred I will go to him, but I have enough to last me for a while. 
  • Posted

    Then discuss this with your GP - and if necessary see another rheumatologist.

    What is it with these darn doctors who assume they know more about YOUR pain than you do?

    • Posted

      As you know, I was so disgusted with my experience of the Rh. dept to which my GP referred me that I chose to manage without a rheumy and, although it took five years, I was very happy with My G.P' care.

      I had not seen a doctor in years before PMR ( nor needed one) so it did take a little while for us to trust each other but then I listened to him and he to me. You don't need to be bullied.

    • Posted

      Absolutely Betty. I saw 2 rheumies in the 5 year hiatus before PMR got a name - each as bad as the other! The one here was OK - other than being more interested in practising his English. And the one I have seen the last month has done the needful with the myofascial pain syndrome - but decided to broach the alendonic acid question "Could she have the originals of my dexascan as the images were better than the copy..." I simply said she could spare herself the time and work looking at them - nothing was going to persuade me to take AA at present. She didn't argue much. But she is a close friend of my GP...

  • Posted

    hmm, I wonder if it occured to her that "your numbers were good " BECAUSE you are on pred?????? Idiot.

    "it's probably arthritis"... Is it? Has the Dr run tests to prove or disprove this speculation? Fancy just giving out drugs just in case you have something!!

    • Posted

      Yes, you're right. I didn't think to point that out to her. But she's the 'expert' because she read about it, whereas I just have the disease, so what do I know?

    • Posted

      I'm not good with confrontation, I go blank, forget what I wanted to say, then remember it all in the car. I do better with passive resistance: nod agreeably,  but then do it my way. 

  • Posted

    Could you stay on the 1mg?

    I wanted to get off the Pred and also went down to fast. After 1 week on zero my pain came back and increased every day. I went back to 3mg where I somehow felt 95% good and lower the Pred now with the "dead slow and nearly stop method". I decided to print out the method and take it to my next appointmed with the doc.

    ?I am now on 1.5/2mg and listen to my body (and not to the doc). I also learned to except the Pred as a "friend" and not as an "enemy".

    • Posted

      I went up to 2 1/2mg, it is somewhat better.  But very annoying because I was doing great on 1mg for a couple of weeks before I had my appointment. I should have just lied to the rheum and told her I was off the pred. 
    • Posted

      I have an app with my rheum at the 18th and will let you know what she will say to the method. Think about changing the rheum.

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