1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Feeling really out of sorts

Posted , 8 users are following.

karenjaninaz
karenjaninaz

Until recently I felt reasonably good and functional. I am doing the snail taper- 1/4mg at a time. I bumped up my exercises a little and usually feel good afterward. I get some aches totally cured with one 325mgm acetamenophen. The generalized unwell feeling has gotten me down. I am currently tapering 81/2-81/4. I don't remember feeling this way at 83/4. Should I go back there for a couple of weeks? Can anyone relate?

2 likes, 38 replies

38 Replies

Prev
  • karenjaninaz
    karenjaninaz

    Posted

    I only went up 1 1/2mg of pred. 8.5 to 10mg but it really helped- so much better today .

    My CRP measured yesterday didn’t budge upward and my sed rate went up a tiny bit but well within normal— not that tat means much.

  • karenjaninaz
    karenjaninaz

    Posted

    Went up to 10mg( 8mg am-2mg pm)- not perfect but much better. Only left shoulder a little sore but I am left handed and if I pull something heavy it acts up. Assorted minor aches which go away. Afraid to go higher or lower.  See rumey Mon for 2 month check up.  Hate the thought of being at 10 again.
    • EileenH
      EileenH karenjaninaz

      Posted

      Why? Being at 10mg and well and functional is infinitely preferable to the alternative! 

      I've had PMR for nearly 14 years. I was finally put on pred over 8 years ago and it took over 4 years for me to get below 9mg at all. Then I went down to below 5mg eventually but the adrenal function sent me back to 5mg. A few months later I had a very strange flare that needed 15mg to cpntrol. That was nearly 2 years ago. I have got to 7mg with no real problems and thought 5mg was still working - but a mixture of things topped off by a change in temperature from plus 20C to minus 10C in the space of a few days put the lid on it: flare! I think 8mg is JUST holding it. But if I need to go back to 10mg to feel good I will. 

      Life's too short to spend it feeling ill if there is no need.

    • Michdonn
      Michdonn karenjaninaz

      Posted

      karenjaninaz, none of us enjoy being on prednisone, but it much better than the alternative. At least it allows us to have an almost normal life. Think positive and try to smile. Smiling :-)
    • jean39702
      jean39702 EileenH

      Posted

      A message a needed to see today Eileen. I've been doing OK at 10 mg for almost 2 months. However, haven't felt well for the last few days. Mainly fatigue and a few niggles in areas I don't like to have niggles.  I leave Panama tomorrow to return to Canada for three weeks. I think I'd be wise to bump up to 11 mg for the next few days.  Thanks fir the reminder.,

    • Anhaga
      Anhaga karenjaninaz

      Posted

      I understand, Karenjaninaz.  When you've been lower it feels like failure to have to go up again.  But Eileen is right, words for us both to heed, I think. cool  

    • EileenH
      EileenH jean39702

      Posted

      Lord - that'll be a temperature change won't it!!!!!!Not that Calgary is looking very wintry today...

    • jean39702
      jean39702 EileenH

      Posted

      You're right about the temperature change! From 29C to 4-6C in Calgary. At least it will still be on the + side with what looks ti be a green Christmas.

      Hubby's not so lucky, he has to go back to the Arctic to work for a few days.  However, it's been reasonably mild there for this time of the year. He may not see anything lower than -17C.

      That's why I'm choosing to stay in Calgary.

    • EileenH
      EileenH jean39702

      Posted

      As I said, we went from 20C during the day, 15C overnight in Malta to -10C and never getting to freezing here in the space of 2 days. At least the sun has shone a fair bit and the house is warm. But I could do with some exercise and it really isn't tempting!!!

    • karenjaninaz
      karenjaninaz EileenH

      Posted

      Went to 10.5 and feel pretty normal.,My rheumy suggested I stay 14 days and then try to drop.

      Any suggestions about the tapering- meaning should I drop more quickly to the lowest dose I felt well at 8.75 before I completely reduced the Symbicort .

      Thanks for your patience.

    • EileenH
      EileenH karenjaninaz

      Posted

      I don't know - it is a bit difficult to know just how much the symbicort was contributing isn't it? In the great scheme of things an extra 1mg that lets you feel really well is not a lot really.

  • karenjaninaz
    karenjaninaz

    Posted

    Thanks, Mitch and Eileen.

    We now have a snowstorm and I feel it. May try to up it a little.

  • Michdonn
    Michdonn karenjaninaz

    Posted

    Lucky you karenjaninaz, we are still waiting for winter. But still waiting thinking positive with a smile. :-)
    • Anhaga
      Anhaga Michdonn

      Posted

      I'm not looking forward to the arrival of snow and ice but I wish we could send some of our unrelenting rain to California. 

    • EileenH
      EileenH Anhaga

      Posted

      My brother in Scotland feels the same!
    • Michdonn
      Michdonn Anhaga

      Posted

      Anhaga, unfortunately the whole SW is in the same weather pattern, huge high pressure system on the SW. Not good till it moves.

      Got to think positive with a smile. :-)

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.