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PMR, Prednisone, Fatigue

Posted , 6 users are following.

kathy67492
kathy67492

Habe had my bouts with severe fatigue over the last 2-1/2 years, but it had dissipated. I am now starting a taper from 8-1/2 to 8m...have only skipped 1/2m this week and already the fatigue is back!?!  Eating right, cut back on activity level, good nights sleep...is this to be expected? Thank you for any comments.

 

0 likes, 7 replies

7 Replies

  • cheryl74384
    cheryl74384 kathy67492

    Posted

    well Kathy i have only been on prednisone since oct 12, 40 mg, already dr,s cut me back to 20 as of tomorrow, coming down every 3 to 5 days, then 20 next 2 weeks, so can,t advise that much, haven,t been bad,except only able to sleep 3-4 hrs, then mid day, feel like truck ran over me, like lead, have to lie down, by evening seem better, although last few ams had some symptons reappear,shoulder , hamstring pain, not like in beginning though, and oddly today have cramp like pain in right calf of leg? not sure if any these partly caused by reduction in meds or not, don,t see rheumy til nove 7th, hope no other surprises in hold for me, everyone on forum says, dr,s tapering me too quickly, but i want to get off as soon as possible, but of course you have to listen to dr,s, and i read if you come off too quickly, serious repercussions
    • EileenH
      EileenH cheryl74384

      Posted

      Everyone wants to get off as soon as possible. Unfortunately it isn't what we want or what doctors want: PMR came when it wanted and it will go when it wants. Until then - you will need some pred. What you can do is get as low as possible in the meantime - but doing it fast just ends up in tears. When you go fast you miss our holy grail: the lowest dose that manages the symptoms as well as the starting dose. 

      Of course - if it is PMR then 40mg was far too high a dose to start on and 30mg would have been more than enough even based on the latest recommendations from the world's top experts. So a speedy reduction at present isn't too bad - except you will feel rubbish. But I hope he slows down a bit after 20mg.

    • cheryl74384
      cheryl74384 EileenH

      Posted

      yes, gp started me on 40, but rheumy did say, usually start treating pmr with 15 mg  so, unless he was taking precautions, re GCA, as i do have hb. but is controlled, anyway, coasting so far, rheumy says just hang in re no seep, til nov7th, says as i reduce , should sleep better, sure hope so, and all these  comments bout coming down too fast, and expecting side affects from withdrawal do scare me, 
    • EileenH
      EileenH cheryl74384

      Posted

      As long as you go slowly you needn't have side effects from withdrawal - and they are nothing to be scared about, they are just uncomfortable really. 

      Don't worry!

  • tpaggs
    tpaggs kathy67492

    Posted

    I think you have to give your body a chance to adjust. If there is no improvement in a few days then you might need to go back to the dose you were on before yourr symptoms came back.
  • EileenH
    EileenH kathy67492

    Posted

    You are at the stage where your body has to start making its own natural corticosteroid (cortisol) again. The so-called "physiological dose" of pred is round about 8mg but some people will be higher, some lower. One of the signs of this is excessive fatigue - and is the reason why fatigue may reappear as you reduce. You expect to feel better as you get to a lower dose of pred but because of this it doesn't happen. Just slow down a bit and don't keep reducing too soon.

    Have you seen this:

    https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

    It slows the reduction right down so your body has plenty of time to get used to the new dose without having to deal with it day after day. It has worked for a lot of patients on the forums.

    • kathy67492
      kathy67492 EileenH

      Posted

      I just started this taper from 8-1/2 to 8....guess I will hold off. I had been on 7-1/2m thru all of June, July and August before the flare that took me to 9m. Have been using the DSNS method. Thought I was ready to get back to the 7-1/2 where I felt ok, but this fatigue is as bad as the pain!
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