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Fatigue – is it PMR, Prednisone, MTX, age ……. ?

Posted , 10 users are following.

Dave-California
Dave-California

I’m celebrating my 18 month birthday of PMR and the longer the time since it occurred, the more fatigue seems to be increasing during my days.

When I was on high doses of my medications during the first year, I didn’t seem to have much fatigue, but now as I have tapered down to 5 mg and the pain levels are OK, I can’t function during the day without one or two quite long naps.

Is this typical for most of us with PMR ? Is it the PMR still not telling the adrenal system how to work properly and messing up the body functions or is it strictly the continuing doses of these medications that we are required to saturate our bodies with ?

I realize that we can never actually ‘cure’ PMR – if we are lucky, it goes into remission for the rest of our lives when we have tapered out of the need for prednisone, but does the fatigue still remain with those in remission ?

I would enjoy reading your reactions to fatigue during active PMR or remission.

Thanks - Dave

1 like, 6 replies

6 Replies

  • tina-uk_cwall
    tina-uk_cwall Dave-California

    Posted

    Hello Dave, I like you never experienced fatigue whilst on the higher doses of preds. However, when I reached 8.5 then 8 and now 7.5 I did then start experiencing fatigue. However, it is very intermittent, sometimes lasting for 1 minute!! Or maybe 5 minutes. My rheumatologist has advised me to contact my GP if it becomes regular but whilst it is spacrodic and doesn't last long not to worry. I understand it could be symptoms of PMR or the adrenal glands not quite working properly. Regards, tina
  • pat38625
    pat38625 Dave-California

    Posted

    Hi Dave, I can identify with you re: symptoms.  I was diagnosed 14 years ago with ME/CFS and then went on to develop fybromyalgia (that has gone) now.  Last November was diagnosed with PMR and put on 20mg pred - am now down to 9mg.  Zero energy.  I am a young 60 year old and yet feel like 90.  I don't talk on the phone, no energy to listen, I don't have friends visit, I wouldn't have the energy to communicate, I have become a bit of a recluse.  I am hoping it will not always be like this.  I had good remissions with ME/CFS and am optomistic about my future with or without pred and with or without PMR.  Good luck on your journey.  Regards Pat
  • EileenH
    EileenH Dave-California

    Posted

    That is because you are at a dose where the adrenal glands are needing to start working again and they haven't caught up yet.

    It isn't the PMR messing that up, it is the feedback system that tells them they don't need to produce anything because there is enough present. The feedback takes some time to settle down - it swings backwards and forwards like a pendulum. The slower you reduce from about 7mg the easier the body will find it because it doesn't get itself sorted out only to be faced with a new situation a couple of weeks later. That means smaller steps (not more than 1/2mg) and spread over a long period. Then stay at the new dose for a couple of months at least. One top expert keeps his patients at 5mg for up to 9 months to achieve this. The dead slow and nearly stop approach is another way round it.

    Some people get to this stage sooner or later - we're all different.

    • Dave-California
      Dave-California EileenH

      Posted

      Hi Eileen – as usual, thanks so much for your info.

      When you say ‘feedback system’, do you mean that the body’s natural stabilizing enzymes, chemical releases, etc.. actually read what is going on and like a computer tell the adrenal controller what to do ? and can this eventually actually be a permanent response ?

      Is there any way of medically testing for this, or is the answer just based on how one “feels” ?

      As I have always followed your firm rules of long increment tapering since I joined the Forum, (and actually responded with your info to my rheumatologist - who eventually ageed with you ! ) I think that after my last slight flare, I “up’ed” to 5mg from 4mg and I have now stayed at 5mg for 3 months – and I am definitely feeling better. Based on what you say – I think I will wait another month or so at 5mg before I taper to 4.5mg despite the fact that I feel quite good.

      Do you personally follow the expert that you mention and consider as long as 9 months per taper interval ? It would seem a very long time to get to zero to do a 0.5mg increment taper – each one being 9 months.

      Thanks again - Dave

    • EileenH
      EileenH Dave-California

      Posted

      Easy question first - no it is just the 5mg dose he likes to keep people at for a long time. That is just under the level where the body has to start producing its own cortisol so there is enough deficit to encourage the set-up to work again. After that pause you can reduce at a steady rate - but not too fast or you run the risk of missing the end point.

      The whole thing is governed by what is called the HPA axis - hypothalamus, pituitary and adrenal axis. Google it and see if you can find a description that matches your level of biology knowledge. It is fiendishly complex but there are bound to be some you can understand. I used HPA axis simple explanation - and the results included the wiki one, which I wouldn't class as simple but then, all things are relative!

    • Dave-California
      Dave-California EileenH

      Posted

      Hi Eileen - thanks - yes, that seems logical for the taper from the 5mg point.

      Also I am a bit of a 'researcher' and have tried to understand the reasons for PMR.

      I just used your HPA axis reference and found interesting (but medically complex) data presented in articles by Cutolo & Straub. It is interesting to see the male/female variations of the DHEA ans ASD levels (lower in females) but that the cortisol baseline is significantly higher in females indicating the HPA axis to be more chronically activated. And then it is interesting to see how the corticosteroid therapy reacts on the the HPA axis deficit.Their conclusions are that corticosteroid therapy presents strong clinical evidence that PMR is an HPA axis driven disease.

      Dave

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