Body Pain 4 wks post Prednisone

Posted , 11 users are following.

I just got off 3 years of Prednisone that started at 60 mg. for GCA. (Was on 2 years just before that for Polymyalgia was on 20 mg.  Just got off that when GCA sarted.  Have been off 4 weeks and am having severe muscle aches and weakness.  My Rheumy thinks it unusual to go that long with withdrawal symptoms and that they are too severe, but blood tests all come out fine.  Has anyone else gotten these issues after having been on high doses over a long period of time?  Not sure where to go from here and need my life back.

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  • Posted

    HI anapp at least that's good news about adrenal glands, but your still left with no answers, it's so frustrating,

    im down to 6mg and thigh pain is back in last 8 weeks or so,

    i was back with rheumatologist end of September, well seen someone off team, there all usually very nice,but guy had no interest, 

    my blood levels had gone up slightly which I expected,

    so tried to stay on strict diet and tried to eat all anti inflammatory foods,

    but had bloods done this week and levels are down,so confused, 

    • Posted

      Yes, is good news about adrenals.  The latest is Rheumy wants me to try 1 or 2 mg. Prednisone again to see if it helps and I also have appt. with my GP to check out other reasons, but I still think it's withdrawal in which case going back on Pred. should work.  Maybe if I take a year to get off 1 or 2 mg. it will work.  smile  I hope you find some relief for your thigh pain.  Have you tried going back up a mg. or two?

    • Posted

      Ye anapp was thinking of going up dose, my levels are down so thought pain would be less, cause blood levels always reflect on pain,

      Have been taken ginger 2oz with orange for past year, think it keeps down inflammation. Do let me know how u get on, do hope u get rid of your painXx

    • Posted

      Put 'Bowen' into the searhc box, top right had side of this page and reead up on it.

      Worked for me and quite a few other people as well.   Might be worth a three week, one hour per week and see if it helps you.

    • Posted

      Thanks lodger for that, I would try anything, I did nothing for 2 days to see if there would be any change, but nothing, have been trying anti inflammatory foods so let know x
    • Posted

      PMRpro kept telling me to try it, I should have listened to her earlier.

      Bowen Therapy, developed by Tom Bowen, Australian.

    • Posted

      I looked it up...sort of like acupuncture without needles?  There is a website, American Bowen Academy where you can search for practitioners, but while there are a few where I am, there is none within 100 miles.  I'm thinking it is probably costly?

    • Posted

      Ask how much  - in the UK it varies from £30 per hour to £50, depends on which part of the UK you live in.

      I considered it was well worth the cost just to try for the three sessions  it got me out of a wheelchair, no zimmer frame and just a folding walking stick, which lives in my handbag just for what looks like rough ground. 

      I still go every three months for a booster session or two.   It makes me feel so well. 

    • Posted

      Meant to add, two of my USA friends, both travelled  one 100 miles and the other 150 miles and it worked for them and they have passed it on to others in the USA.

      I sometimes forget how big a landmass is of USA, UK could probably fit in Texas and then get lost wink

    • Posted

      lol...thanks for the updates.  Maybe I'll be able to find someone who's willing to take a trip with me.  I'm glad to hear it helped you so much.  I read that it does not work for everyone.  That would probably be my luck but I may just try for it.  Thanks again.

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