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PMR, prednisone and fatigue

Posted , 18 users are following.

kathy67492
kathy67492

As you gradually taper down n the prednisone, does the fatigue get worse, or better? After the PMR is gone does the fatigue totally go away? Thanks!

1 like, 28 replies

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  • Oregonjohn-UK
    Oregonjohn-UK kathy67492

    Posted

    Hi Kathy - I would like to know the answer to this one as well!  I'm in the same situation - wacked out!!   I'm on 8 mg and not much has changed with the fatigue.
  • pat38625
    pat38625 kathy67492

    Posted

    Hi Kathy, I wish I had the answer but I have been living with ME for 14 years, I cannot say I am used to it, but now with PMR I have less energy, not that I had much anyway.  Someone with more experience than myself, will be able to answer your questions.  Good luck.   Regards Pat
  • Sheilamac_Fife
    Sheilamac_Fife kathy67492

    Posted

    My understanding is that the fatigue comes from the PMR, not the Prednisolone, so it may well be there for the whole course of the condition. As it improves I too am hoping that the fatigue will lessen.

    This may or may not help but I started taking my Pred in the evening after my supper as it was suggested that for some people it helped with the fatigue and the brain fog and it certainly has! I rarely need a sleep during the day now and although I can't claim to be totally on the ball mentally, that hideous fog has lifted.

    • Mrs_CJ
      Mrs_CJ Sheilamac_Fife

      Posted

      Hi sheilamac

      My main symptoms are fatigue and brain fog.  I'm on 4 1/2 mgs of Pred and have been at that dose for almost 10 months - I just can't reduce no matter how slow I go. 

      Could you tell me more about how you made the switch to taking your Pred in the evening?  I currently take mine when I wake up during the night which is usually 3:30-4:30 am. 

      Have you been taking it in the evening for a long time?

      What time in the evening do you take your Pred?  I assume its the normal white Pred and not the special coated ones?

      and what dose are you on?

      i can't figure out this PMR fatigue. I will have maybe a week when I'm doing just ok (nothing like pre-PMR of course) and then I kind of crash and have no idea why.........not from overdoing, no stress, etc.  very frustrating!  I'm hopeful your plan will help me too. 

    • Sheilamac_Fife
      Sheilamac_Fife Mrs_CJ

      Posted

      Hello! I have just got down to 11mg. Started on 15 July 16 2014. I haven't had pain since the Prednisolone took effect, but the fatigue, brain fog and blurry eyesight have been a problem.

      i always took my pred in the morning after breakfast, so that could be any time from 8 to 11am. That's what i was told to do, but have since read that the time you take it is much better because it is the time that the adrenals naturally produce their steroids, so this would be best for wakening without pain and stiffness. However, what I was doing was working fine so I didn't change it until this idea of taking it in the evening was suggested.

      i had to gradually shift the time over a few days until it was the evening. I was anxious that I didn't take extra or not enough in the 24 hours, but you would be in an easier position, wouldn't you. You could just slip it back a few hours. I have some supper or a yoghurt at about 9pm and have been lucky in that it hasn't made getting to sleep difficult as I thought it would. 

      I started the the new timing middle of January and I commented in my PMR diary 10 days later that changing the timing had given me a great week. 

      I still ill have some tiredness but not the totally overwhelming collapse into sleep... The brain fog lifted to a large extent, so I have stuck with it.

      t think maybe you should check with Eileen though before trying this because it might impact on your natural adrenal functioning.

      I hope I haven't rambled too much and this answers your questions.

       

    • EileenH
      EileenH Sheilamac_Fife

      Posted

      Why check with me? I'm not a doctor - I just present the facts from the medical literature and the experiences of hundreds of patients before you!

      One day of a bit too much won't hurt - take it one day as normal, then take the next dose the same evening. That's effectively what I do when on a long haul flight, it's the only way to manage it without it taking ages and what happens if someone forgets their dose one day, takes it a bit later and then the next day as normal.

      The adrenal functioning is far from  "normal" anyway once you are on a moderate dose of pred - taking it early morning is just as close a mimic as possible but if you are on over 10mg/day there's not a lot to influence really.

    • Sheilamac_Fife
      Sheilamac_Fife EileenH

      Posted

      Thank you Eileen.

      Mrs CJ is on 4.5 so I thought her Adrenals would maybe be kicking in again and wasn't sure if changing the timing of the dose would effect her.

    • kathy67492
      kathy67492 EileenH

      Posted

      Thank you to all who relied to my question about the fatigue....very helpful.

      Eileen, you mentioned a "long haul flight" which I will be taking in April...from Florida to Rome. Are you suggesting that I take my a.m. Dose of prednisone when leaving Newark...then proceed with the next "morning" dose, even though I will be arriving earlier than when the dose is due; or should I "count the hours" between doses? Hope I phrased that right!

    • EileenH
      EileenH kathy67492

      Posted

      Yes, take your dose the morning of travelling and the next dose the next morning otherwise you will be taking pred in the middle of the day and that isn't very good. It just means you effectively have a slightly higher dose that day but that will help with the stress of travelling and won't do any harm.

      Travelling the other way where I have the long day I take a slightly higher dose of pred that morning and go back to normal the next morning: say if I am at 8mgs, I would take maybe 10mgs for the long day of travel and go back to 8mgs the next morning.

    • kathy67492
      kathy67492 EileenH

      Posted

      Most helpful....if my printer will work I will print your reply...otherwise my foggy brain will forget the instructions by the end of April!! Thank you!
  • mrsmop
    mrsmop kathy67492

    Posted

    I was taking Pred for a different condition and took it for 3 years, finally stopping last October.  I have been on MTX for 18 months but stopped it recently because it caused tremendous pain in my hips and thighs.  My Consultant told me last year when I complained about pain and fatigue, that it was steroid withdrawal and my polymyalgia but I am at a stage now, where I find it unbearable.

    I have an urgent appt on March 31st.  He had wanted to see me 2 months ago but, as ever, they are very behind with the appts..

    So, I too, would be interested to see if anyone comes up with an answer.

    • mrsmop
      mrsmop

      Posted

      There is also a debate as to whether or not I have PMR

       

  • liam15153
    liam15153 kathy67492

    Posted

    Hi Kathy

    My experience over one year of tapering down from 20mg (since March 2014) was severe fatigue, requiring a lie down in the afternoon; I didn’t fight the fatigue as it only got worse if I didn’t rest. When I got to around 5mgs, (end Dec 2014) the fatigue began to gradually lift.  Since then I have tapered down to 3mgs, and my energy levels are slowing returning but not as yet to normal. Everyone's experience is different but keep up the slow tapering and hopefully you will have similar positive outcomes.

     

  • EileenH
    EileenH kathy67492

    Posted

    It can be either the PMR or the pred I'm afraid and it depends on which it is for you. Pred has never made me particularly tired but pMR would dend me to sleep in the afternoon - definitely not pred, wasn't on it at the time.

    The fatigue - that "I've been run over by a bus and I can't even be bothered to get a cup of tea..." feeling - is more likely to be due to the autoimmune (a/i) disorder that causes the symptoms we call PMR. The pred does nothing to change that so won't improve the fatigue in that sense. You may find you are euphoric and turbocharged due to the pred at the higher doses and that may offset the a/i fatigue. You can manage the fatigue a bit by pre-empting it and resting - I often suggest reading a blog called Despite Lupus by Sara Gorman. She was diagnosed with lupus a few weeks after her wedding and she tells her story of learning to manage the fatigue. If she has a fixed nap period in the early afternoon she can manage then until a normal bedtime, without it she is in a crumpled heap and has a flare pdq! She has 2 small girls, a home and husband - and runs a business and travels and lectures on lupus! But without the rest - no way.

    As you reduce below about 7 or 8mg you are into the region where your body has to make its own corticosteroid again. It isn't that the adrenals have packed up as many people think - it is the complex feedback system governing it all that has to settle down and it isn't just cortisol that is being adjusted - it is thyroid and sex hormones and other things too. Thyroid hormones shooting up and down also causes exhaustion - it's a real mix. Until they have fine-tuned themselves you can feel not only tired but also quite emotional and weepy. Not everyone has to deal with this - like everything else we are all different. However, one thing is certain; going VERY slowly over the bumps makes the journey less uncomfortable! 

    I'm still on pred, 4mg at present, but I used the dead slow and nearly stop technique to get from 15mg down to there and haven't had any real problems. I wouldn't say I was a bundle of energy - if I feel it a couple of hours walking up a hill soon reminds me it isn't that good! But I don't have the deathly fatigue I did much earlier.

    From what others who have got off pred have said I think it takes a while to get back to "normal" and bear in mind you are x years older at the end! One lady said last summer that she woke up one day and suddenly felt "different" and since then has reduced her pred 0.5mg at a time and is down to 0.5mg. Another lady told me recently she thinks she too has has a similar moment and is hopeful the cause of the PMR has gone into remission.

  • pat38625
    pat38625 kathy67492

    Posted

    Hi Kathy, I know what you are going through.  Having ME for 14 years I should be used to the tiredness, but it's now my new normal.  I would be exhausted but too tired to go to bed (get up from the chair to turn lights out, lock up ect.)  some days are better than others.  Good luck    Regards Pat
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