In need of some advice please

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PMR diagnosed over two years ago . Initially able to reduce regularly but never below 8mg and so the up/down began . Moved house and GP , referred to consultant at Derby Royal. PMR Diagnosis comfirmed so handed back to new GP. Started regular blood tests and supposed to reduce by 1mg about every six weeks if blood tests OK. Have tried despite some pain in my neck , arms , shoulders and hips which two separate GPS at the new practice dismissed as arthritis' at my age' . Got down to 6mg but last couple of days pain in arms and shoulders real problem . Had I presume annual check up appointment with consultant who said up the steroids and consider taking methotrexate. I cant remember at what dose the pain returned so i took 8 mg today . Dont feel any better . Should I persevere at 8 for awhile or up the dose further and what about the methotrexate. I'd appreciate some advice please if anyone can make sense of my ramblings !

JOAN

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  • Posted

    Thank you all for the replies with advice on dealing with flare , where would we be without this forum !!!!!! can I ask about the methotrexate? The list of possible side effects looks horrendous. It was described as a steroid sparing drug by the consultant who offered it. Has anybody found it helpful in reducing the steroids .?

    • Posted

      If your normal dose is already in single digits I doubt that mtx would on balance be of any benefit to you. As you note the side effects can be serious, so why add them to the mix? Besides, by about 7 or 8 mg pred you are only getting the amount of cortisol your body produces normally, albeit in a more powerful form, so pred side effects are much reduced and any "need" for a steroid sparing substance rather irrelevant.

    • Posted

      All methotrexate did for me was magnify the adverse effects! Worst was the fatigue which was so bad after a month I couldn't face the thought of continuing. I bruised, my hair fell out in clumps, I felt awful. Nothing was worth that!

  • Posted

    Methotrexate takes several weeks to work , I have been able to come down to 5 mg Pred plus I am on Methotrexate 2 x weekly on a Tuesday only and plequenal 2x daily .

    My initial diagnosis was PR just over 1.5 years ago and it surfaced out of the blue, I was sent to a specialist about 6 months after.

    After several tests it was confirmed I had Rheumatoid Arthritis.

    I am starting to feel achy again in all the usual places I had with PR, not as bad, but hovering and I am feeling very anxious about that.

    I hope you are going to be ok, but I feel this thing never goes , its always seems to be in the background.

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