Off and on prednisone for 2 years

Posted , 6 users are following.

Recently I tried my second attempt tapering my prednisone dose. Was down to 2 mgs and thought I was ready to taper down to 1 mg. I was wrong , I think. I started to get bilateral shoulder / upper and underarm pain almost immediately after tapering to 1 mg. I should mention my right shoulder does have a full,rotator cuff tear and it hadn't bothered me in ages . Then the left  shoulder, upper arm and occasional underarm started sending jabs. I have to also mention I've been lifting some heavy objects lately, including my newest grandson. Anyways Rheumy  told me to go back up to 2.5 or to try 5 mgs if that didn't releave  the pain. Nothing has helped , is the pain coming from tapering or a new flare of PMR? Or something else ? Any help would be greatly appreciated

 

0 likes, 7 replies

7 Replies

  • Posted

    PMR is not a short-lived disease. For a quarter of patients it lasts about 2 years, rarely less. For half it continues to require pred management for up to 4 to 6 years (and Italian study found that one third of patients still require pred at 6 years whether they had been on methotrexate, a supposed steroid sparer, or not) and a quarter of us can be on pred indefinitely. I have heard of people who finally got off pred after 11 and 13 years. I know others still on pred after even longer (I'm 13 years PMR and 8 pred and counting).

    But you have to do your bit too - I'd think it were very likely to be that lifting that hasn't helped and the PMR is attacking your weak spots.

    • Posted

      I know lifting did play a part in this shoulder pain. I just wonder if it's PMR back or if it was withdrawal ? My sed rate was neer elevated and my CRP was elevated once. I'm Just confused.

    • Posted

      Mine neither - you do have to become very body-aware.

      If this is a flare though - you will almost certainly need more than 5mg to sort it and there is no virtue in taking too low a dose. You have all the downsides of pred with no benefits.

  • Posted

    Did yoou mention - yo-yoing over the past two years?
    • Posted

      Yes, you could say I've been yo - yo ing . On my own , I took 10 mgs of Prednisone this morning and feel a bit better. The 5 mgs my Rheumatologist put me on wasn't "cutting it". I hope I dont have to go any higher in mgs !

    • Posted

      Ok, sent you an email and also beware of Rotator Cuff , it can and does affect people with PMR.. Not always just sometimes............
  • Posted

    Bert, I just went through a shoulder flare that alternately hit both shoulders.

    I had got down to 1.75mg/day in my usual seasonal dosage drop, this time I held at under 2mg for a few months but when the springtime lawn mowing took the place of my preferred cycling exercise my shoulders became very painful.

    I had to go up to 7mg/day for about two months to get 80% relief, now I have dropped to 6mg.  I expect to be trying for 0mg during this fall and winter, before I again have to put in the hours of yard work in steep terrain. I have managed to sustain my total relief of hip pain since this winter, I started running a year and a half ago after my first two years with pmr, which has helped, and now my shoulders seem to be the last area to be affected. At least I can run normally at this time and that seems like a big deal in terms of my overall recovery.

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