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PMR relapse

Posted , 10 users are following.

ling42044
ling42044

Hi everyone,

I am new to this forum.

I had PMR for 3+ years.  Started on 30mgs and managed to come down to 1 mg in the last year .( I went from 3mg to 1 mg in one year, i thought that was quite slow).  I had a relapse after a long spell of flu. Reluctanly , i went back up from 1 mg to 5mg then 6mg and now 10mg in the last 2 weeks.  I am not completely 'pain free'.  Should i go up a bit more with my pred to aim for totally pain free, or may be just enought to get it toi 'bearable pain' that i cold carry on with my daily life.    thank you for any suggestion.

 

1 like, 27 replies

27 Replies

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  • pauline36422
    pauline36422 ling42044

    Posted

    hi ling  your not on your own  at this stage.  i am at the shall i shant i. stage with the pred..   but  i feel  i  should up the pred.   just in  case.   but i have decided to hang fire,

    for now,  as i am going for a dexa scan on thursday. and if that is ok   i will up mine to 3 mg   see how i go.    i have also started to drink green tea   see if that helps

     

    • ling42044
      ling42044 pauline36422

      Posted

      Thank you Pauline.  Yes ,it is difficult to decide whether to increase Pred.  Having read so much comments on this blog, I have come to accept the idea that it is better to have a life with Pred, and deal with the side effects of Pred , than to suffer in pain, and not able to do things and carry on living !   I think the advice seems to be finding the right dose that suits you and enable you to do thing without the pain, and keep it as a maintenance dose.   good luck with the Dexa scan.  Greentea is good.
    • sharon35553
      sharon35553 ling42044

      Posted

      HI Ling, I agree with you, the pain is not worth it, I too just went from 10mil pred to 15and praying it helps. I am in such pain across my ribs, and my entire back is killing me. Had X-rays, mammo, all normal and I've never had this pain before I tapered from starting dose of 20mil a year ago. Haven't been the same so now hoping it gets somewhat better with higher dose. Good luck to you,

      Sharon

  • sharon35553
    sharon35553 ling42044

    Posted

    Hi Ling,

    Wow this up and down is really something. I can relate and wish I could get that low but unfortunately Im at 10 mil and in alot of pain. For me 20 mil was perfect, I was pain free 100% & yes that is asking for to much to stay that way and even at 12 mil I was ok, not perfect but tolerable. Now that Im in so much shoulder pain and chest pain my Dr wants to taper me fast down to zero which of course I will not do so now looking for new Rheumy. Good luck to you,

    Sharon

    • amkoffee
      amkoffee sharon35553

      Posted

      I'm in the same situation as you. Every time I got to 10 MG I would go into extreme pain. So I would call my doctor up and she would say I could go back up to 15 and then she would want me to drop back down to 12 and then 10 again. So when I saw her the last time I told her this time I'm tapering at my own pace and I had to argue with her. I argued with her and finally got my way and the reason I did that was because I don't think there's a better rheumatologist in my area. And I really was afraid of jumping from the frying pan Into the Fire. She came very well referred. And I did try to call one of the rheumatologist in town and when I asked the nurse if any of the doctors in the practice were well informed about PMR she asked me what PMR was. So I told her nevermind. Lol

    • sharon35553
      sharon35553

      Posted

      you are in the exact same boat as me, my Dr also wants me down and completely off the pred, I was pain free at the 20, my neuro Opthomologist agrees with everyone here, told me to go up in dose and get to a tolerable one, my rhualologist tells me no way so I'm caught between two Drs who totally disagree, I'm listening to the one who wants me out of this pain, no matter the small side effects I cannot live daily like this.

    • EileenH
      EileenH sharon35553

      Posted

      And find another rheumy - if they make a diagnosis they have to then step up to the plate and use the applicable therapy. Which, in the case of GCA and PMR, remains pred for the moment.
  • connie85235
    connie85235 ling42044

    Posted

    i have had PMR for 3 years as well and I have just relapsed this week, again. I am constantly on 10mg daily but will take 20 a day for 3 days and then back to the 10mg on the 4th day and that usually does it. I was told that I can take the 20mg up to 7 days to get the pain under control but it doesn't usually take that long. I would say if your pain is still pretty strong to keep up what you are doin for a couple more days cause if you come down to soon you will relapse all over again. I have been there so I am speaking from experience, but I am by no means a physician. take care and I hope you get relief soon....

    • connie85235
      connie85235 EileenH

      Posted

      yea, my first post and I made the mistake of not checking if it was a new post... my bad
    • EileenH
      EileenH connie85235

      Posted

      Only told you so you didn't feel you were being ignored - start a new thread, tell us about yourself.

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