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  3. Polymyalgia Rheumatica and GCA

I've been set free

Posted , 13 users are following.

whitefishbay
whitefishbay

Just returned form my rheumy apt and he has signed me off.  I am still on 1 mg but he said some people stay on 1 mg for life.  I really thought he was going to give me a hard time.  Yay.   

I will still be reading these discussions as we are friends for life.  Thank you so much for all your help, laughs, guidance and support.  You know I couldn't do it without you.

Thank you and happy summer (it is really here).

Michele 

4 likes, 16 replies

16 Replies

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  • Twopies
    Twopies whitefishbay

    Posted

    Yay!!! Happy dance!  How long were you on pred?  Will you try to reduce further?  
    • whitefishbay
      whitefishbay Twopies

      Posted

      I think I was on it @ 2 years something.  I will try to reduce to zero but not in  a hurry.  Funnily enough my rhuemy diagnosed it as 'probable' PMR because my blood test was never too high but he agreed 'what else could it be'.  I will also try to reduce what I weigh also as I had to get on the scales...yipes.  Worst bit. I weigh the same as my 6'2" son.  

    • Twopies
      Twopies whitefishbay

      Posted

      Thks for your prompt reply.  Best wishes to you, you lucky 🐕!  

  • Daniel1143
    Daniel1143 whitefishbay

    Posted

    If you’re at 1 mg you’re probably ready to taper it to half and then zero. Give it a try. You can always go back. Took me about six weeks to go from 1 to 0 but I did it one year ago. I still have periodic flareups but they are mild and not so bad that I need to return to prednisone 
    • RD_Swede
      RD_Swede whitefishbay

      Posted

      Congratulations! I hope you will soon be in Club Zero, but my advice is to take it slowly. Maybe 0.5 mg a day for 1-2 months and then 0. You could also cut pills to 0.25 mg and take a longer time. Daniel writes that he has still flareups and I think it is better to go more slowly and really be off pmr.
    • Twopies
      Twopies RD_Swede

      Posted

      Yes! And a fellow friend of mine also with pmr did 1/2 every other day (after being on 1/2 for many months) before trying all 0.   1/4 is a good idea too...
    • brian75018
      brian75018 Daniel1143

      Posted

      Good to hear from someone who has actually been able to do without steroids.I have been down to 1mg/1/2mg and 0mg fluctuating for quite a few weeks. In other words I can give up for the odd day but always need to go back to taking a minimal amount.Not so bad though I guess.

       

  • BettyE
    BettyE whitefishbay

    Posted

    Well done!  Good news always welcome.

    I stayed on 1 for quite some time and felt rather superstitious about stopping. Went down in very easy stages even from there; pill chopping and alternate daying and finally stopped. No hurry at that point if 1 for life is considered ok.

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