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

PMR, Prednisone, New Symptoms

Posted , 6 users are following.

kathy67492
kathy67492

2+ years into PMR. Have tapered to 7-1/2. Two weeks ago I mustered 7m but only for two weeks. Past couple of days I have considered going back to 8m for more comfort, less fatigue.

But now, this afternoon, I suddenly have painful ankles and hands!

Left foot has been a problem with PMR all along...but never with swelling in the ankle. I have had a little arthritis in my thumbs for years, but it doesn't usually bother me that much. What is going on? New "bonus" PMR symptoms....or maybe rheumatoid arthritis, or ? I am vacationing in beautiful weather...warm, sunny...so it is not the cold. Very discouraging. Any comments welcome!

0 likes, 6 replies

6 Replies

  • Daniel1143
    Daniel1143 kathy67492

    Posted

    Kathy, remember that your body produces about 7.5 mg of cortisol on its own.  When you start taking prednisone, your internal production of cortisol basically shuts down.  When you dip below 7.5 mg of prednisone, it has to kick back into gear and this takes time.  This is why you cannot shut off prednisone cold turkey.  I have slowly tapered to 5mg. All sorts of PMR symptoms and am often wanting to go back up.  But am holding off because prednisone is bad stuff.
    • kathy67492
      kathy67492 Daniel1143

      Posted

      Thank you...guess I feel that I have not had too many side effects from the prednisone, so I do not expect new symptoms when I am tapering. I must admit that, in hindsight, I have had a lot of weird pain, rashes, etc. over the past two years...guess it will continue.
    • JanSP
      JanSP Daniel1143

      Posted

      Daniel, You mention 7.5 mg of cortisol produced by the adrenals. My rheumy dosn't think I'm producing any even though I dont think I've had a test for it. With four GCA flares over almost 7 years and pred up to 80 mg I'm now on 25 mg, .8meth (down from 1)and actemra for four weeks. I see my rheumy on Wed. and I don't know what to do if she suggests coming down to 20mg. I don't know what the actemra will do. I take a shot every other week and today is my 5th shot. I'd go extra slow with my history but I'm so bloated it's interfering with my breathing and the weight is stirring up my scoliosis with back and leg pain. I also have PMR with one flare - probably because of the high pred for the GCA. 
    • Anhaga
      Anhaga Daniel1143

      Posted

      I'm at 5 mg now, too, and think I'll have to hold here for a little while,  Getting a return of the tiredness I experienced at 7 mg.  But no appreciable return of PMR stiffness or pain, touch wood.
    • Anhaga
      Anhaga JanSP

      Posted

      You would not be producing any cortisol at that level, nor will your body feel any need to do so until you taper down to that 7 or 7.5 level.  It can take a while to get started agin, and I've read that even after successfully off pred altogether it may still take up to a year for the whole hormone production thing to be back to normal.  If you do have problems when you get to the 7 mg level they can run a test to find out whether the adrenals have started to function again.
  • carol20979
    carol20979 kathy67492

    Posted

    I had a terrible time adjusting to taking it full time I was on 10 mg.Then when I started to tapper I had wd .It was explained to me that once you drop under 10 mg your body in a sort of withdrawal until  you adrenal glands get back up to speed.Go very slowly I am now at 1.5 sometimes 2mg and am doing well. Just take your time listen to your body. Best of luck there is very good advice On this forum they have been my rock in bad times. Best wishes 
Back to top

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.