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Zero Prednisone achieved - maybe spoke too soon??. . . .

Posted , 19 users are following.

Juno-Irl-Dub
Juno-Irl-Dub

In a previous discussion here, I speculated on whether continuing on a really low dose of Prednisone (as opposed to stopping completely) may have some protective effect re. preventing a recurrence of PMR. . . As far as I know there is no evidence to support this but maybe????

After 4 and a half years on Pred. and reducing very carefully and slowly, I decided to stop my 0.25mg. on alternative days and I felt confident to finally say goodbye  to it altogether in Jan.  Then followed a really savage Aussie flu' which took a few weeks to get over and left me pretty shattered but am now fine. However, just 2 weeks ago those familiar upper- arm aches started, just mild, but a cause for re-thinking . . . Could there be a link with the 'flu?

Can anyone advise me here? Should I wait and see if it gets worse OR should I start back on Pred. even at low dose? I'm not being precious about taking Pred. and I'm sure many of you would just love to be on a low dose, but my difficulty is that I also suffer from OP and Pred. is really not good for the bones. Would be grateful for any suggestions. Thanks.

J

 

0 likes, 24 replies

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  • janet_04795
    janet_04795 Juno-Irl-Dub

    Posted

    I was on pred for 2 years  and also reduced it extremely slowly until I was off it last June. I had almost 3 pain free months until September when it returned. I had to go back on 7.5 which is now reduced again to 3.75. I also have osteopenia and would like to be off it but my rheumatologist says I may have to stay on a very low dose.  I have been able to go back to exercising for the first time in 2 years  this past month on this dose which makes me happy
    • Juno-Irl-Dub
      Juno-Irl-Dub janet_04795

      Posted

      Hi Janet, thanks for your reply. Did you just feel mild symptoms  or did you get a full-blown flare?

      J

    • janet_04795
      janet_04795 Juno-Irl-Dub

      Posted

      I restarted the pred again when it became uncomfortable doing activities like raising my arms or walking.  It took a few months to initially see my rheumatologist and by then I could hardly walk and had difficulty just getting dressed because of the pain, I did not want to go there again. 
    • Juno-Irl-Dub
      Juno-Irl-Dub janet_04795

      Posted

      Thanks Janet.  So far I just have the 'achey' arms, otherwise ok. But it just could be the 'slippery slope' . . 

      I wouldn't worry so much about Prednisone. if I had osteopenia like yourself but my OP is severe, though I've had no fractures. . . .  J

  • EileenH
    EileenH Juno-Irl-Dub

    Posted

    I have flu at present (more a REALLY severe viral infection, I'd not pass the flu test of not being able to pick up a 50 euro note on the floor, I'd have to be dead for that). And I have a major flare feeling - and the myofascial pain syndrome, trochanteric bursitis and atrial fibrillation are all coming in to party...

    At below 3mg the pred isn't doing anything detrimental to your OP that wouldn't be happening anyway. 

    • Juno-Irl-Dub
      Juno-Irl-Dub EileenH

      Posted

      Sorry to hear of your viral infection and well well done on your E50 test!

      I almost failed the ' I-need -to-use-the-toilet-NOW' test. Very close shave. .  Sorry you're so ill and nothing to do but let it take it's course and keep up the fluid intake. I spent 6 days in bed absolutely unable to get up and drinking only iced water and orange juice.. . . Lost weight and wedding ring fell off!!  That may be a plus for you (effortless weight loss!) but when you're thin and loose even more weight, you look as if you're on the way out.  I'm hoping that your "major flare feeling" is a false alarm . . .but the MPS, bursitis, and AF sound awful. Fingers crossed for you and thank you for even answering. 

      J  (hug).

      PS. I might try 2.5mg Pred. and see if it does the job . . . .

       

    • EileenH
      EileenH Juno-Irl-Dub

      Posted

      Aye, well, a week in bed and losing weight would be my dream. Unfortunately it can't be proper flu - I still want food although the thought of doing the work doesn't appeal...

    • diana21296
      diana21296 EileenH

      Posted

      Do hope you soon feel much better Eileen. Spring is coming which is very cheering for us all and the lighter nights help too.
    • margaret89358
      margaret89358 EileenH

      Posted

      Get well soon Eileen. Not good with all the other symptoms you have to cope with. Keep warm and hopefully husband is waiting on you.  For you 💐

    • EileenH
      EileenH diana21296

      Posted

      Haha - still 6 inches of snow out there! Nothing peeping through the ground up here yet. We should have been down in the low valleys on Friday for a hospital appointment but both of us are coughing and spluttering so didn't feel like the 2 hour trip each way or spreading the bugs in a radiotherapy unit! And there it would probably have been just warm enough to sit outside for coffee!

      Margaret - he has it too!!! 

    • BettyE
      BettyE EileenH

      Posted

      Hope you soon feel better. The current bug doing the rounds here seems to be an energy sapping cold that refuses to respond to anything but time....about three weeks in some cases.

      So far I've escaped but I do live at the end of a half mile farm track.

    • EileenH
      EileenH BettyE

      Posted

      I suspect that is what it is - it doesn't really qualify as flu. We have only succumbed because of visiting UK cousins - he developed it here while skiing. She seems not to have - no justice...

    • pauline36422
      pauline36422 EileenH

      Posted

      hi eileen get well soon  you have had a long journey. and sill find time to sort us out    best wishes 

      pauline xxx

       

    • margaret89358
      margaret89358 EileenH

      Posted

      Oh no that is bad luck. Hurry and get well to you both. Hopefully you have both been able to watch the winter olympics. 
    • peggy_56092
      peggy_56092 EileenH

      Posted

      I am thinking good thoughts for your recovery; and your husband's.

    • jean39702
      jean39702 EileenH

      Posted

      Sorry to hear you've been smitten Eileen and more so that all the other achy ills are ganging up on you too. Wishing you both a speedy recovery.. 

       

    • linda17563
      linda17563 EileenH

      Posted

      Hope things ease for you soon......awful how everything else kicks in as well!
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