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Trying to get off steroids

Posted , 11 users are following.

kathleen21605
kathleen21605

I started with 15mg last August when I was diagnosed.

I have yet to see a rheumatologist and have been waiting since last November. I am trying to wean myself off as have had lots of side effects. I now take 6mg but do get pain in my neck and hips. Can anyone say if I am doing the right thing. My Dr seems to think that now I have been referred its up to them to sort it.

0 likes, 20 replies

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  • sandy08116
    sandy08116 kathleen21605

    Posted

    My first appointment with a rheumatologist was a couple of months after first diagnosed GCA. But I was well looked after; the GP knew there was something wrong and needed more intensive tests for a positive diagnosis. I was referred to the Diagnostic Unit in our local hospital (North Shore Hospital in Auckland) where, in a couple of days, was put through tests, scans, x-rays to narrow the field. It was agreed that it was GCA and put on a maintenance plan, including frequent blood tests, a temporal artery biopsy (that was positive) and told a hospital rheumatologist will monitor and advise for the duration. The Rheumatologist and GP share their case notes with me as I wanted to know exactly, blow by blow, what was happening. What was the effects of the disease v the side-effects of the drugs. I stuck to the regime religiously and GCA has gone, next month I come off prednisone. It's taken 14 months.

    We are very fortunate to live in countries with an excellent national health system. For me, hospital care, visits, surgery were all free and prescriptions cost $NZ5 per unit.

  • peggy_56092
    peggy_56092 kathleen21605

    Posted

    I was diagnosed PMR Jan 2016 and given prednisone by a GP.  I live in the US and have never seen a Rheumie.  I got most of my information from this site and Eileen.  My life almost normal, what with a knee replacement last year at the age of 78 while taking 6 mgs pred for the last couple of years.
  • nancy15228
    nancy15228 kathleen21605

    Posted

    I started weaning off on my own , gaging by my pain.  I have had success with .25 mg decrease per week...no pain and working out too!  I’m down to 14.5 and hoping I can continue decreasing with out pain...nobody knows how you feel...my Doctor almost killed me the first time I followed his instructions for decreasing dosage
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