very low energy, no get up and go....

Posted , 10 users are following.

I am experiencing very low energy and somewhat feeling weakness.  This is new to me, i am down to 6m from 20; would this be considered a flare?

 

0 likes, 11 replies

11 Replies

  • Posted

    I don't know your story. Margo, but low energy and weakness come with PMR, however long you have had it, and however many mgs you are on.  The experts will no doubt answer, but alone this wouldn't suggest a flare.
  • Posted

    Not necessarily, Margo, but it needs to be watched in case inflammation is resurfacing.  If it has only been going on for a few days, it could simply be that your have some infection or virus lurking.  If you had raised markers of inflammation at diagnosis then do get the tests repeated to see if they reveal anything.  If it's been going on for longer, then perhaps a return to a slightly higher dose will give you the answer.
  • Posted

    Hello margo, I'm sorry to hear you're feeling so fatigued. I am presently on 8mgs and my rheumatologist said that once I get to 7.5ish mgs my adrenal glands should be trying to kick in again and so I may experience some fatigue. If it's only sporadic then not to worry but if it happens daily for long periods I should get myself back to my GP as the adrenal glands may not be working as they should do and this is something that must be looked into. In your case you are on 6mgs of steriods and this is below the amount the body normally makes so if your adrenal glands are not working properly your body is not getting enough steriods to allow the body to work and function properly. 

    Having said all that it could be that you are suffering a flare because fatigue is a side effect of PMR. Maybe you should visit your GP and take it from there.

    how long have you actually been on 6mgs and when did the fatigue begin?

    hopefully others with far more knowledge will be along soon to offer much better advice. All the best, christina 

    • Posted

      I am so grateful for all the responses to my ...'low energy"  Having this knowledge about the adrenals, is giving me another level of understanding.  Thanks

       

  • Posted

    How quickly have you gone down from 10mg to 6mg? What size steps and how often?

    As Christina has said, below about 8mg your body has to start to produce its own corticosteroid, cortisol, again. While you are on higher doses of pred there is enough sloshing around in your system to make domestic production unnecessary but about this level it has to get going again.

    It isn't a case of your adrenal glands not working but the production is controlled by a very complex feedback system involving the hypothalamus, the pituitary and the adrenal glands (and other bits too) and a whole range of hormones. It is a major balancing act and a change in one bit affects all the rest so they have to rearrange themselves to get balanced again and that can take a few months. Below 10mg many doctors tell their patients to reduce at 1mg per month - and many have problems as a result as their body simply can't keep up. By reducing SLOWLY you can give it a better chance to manage - MrsO's doctor tells patients to stay at 5mg for up to 9 months - but some people get into a wobble above that. 7/7.5mg is a common sticking point, mostly for this reason. Lots of people are fine - but others aren't and the most common symptoms of this "adrenal insufficiency" are increasing fatigue and weakness. If you were to continue reducing you could end up with a real adrenal insufficiency crisis which can be quite a serious matter.

    I wouldn't reduce any further for now, stay at 6mg until you feel better. If it doesn't improve the easy answer is to go back to the dose you last felt well at and then reduce more slowly once you feel better - but I know you don't want to do that! If you suffer from adrenal insufficiency the only answer is to add a bit more pred so it may be needed. On the other hand, if you feel reasonably well then just hanging about where you are now for a few months and avoiding stress and over-exertion may be all that is needed. And then do 1/2mg reductions - and preferably spread them over a few weeks as in the "Dead slow and nearly stop" reduction plan which is in the replies here:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    • Posted

      Such good clear, information; knowing the whys and wherewithalls  always feels more comfortable to me.  I am going to hang in for another 3 or 4 days and then give my rheumy or primary a call.

       

  • Posted

    Although I don't have nearly the knowledge of others who have answered you I just wanted to add something. 

    After my last flare, I had to increase to 25 mg from 13 to get relief from the pain.  

    Before that time on the lower dose I never felt the extreme fatigue.  However, shortly after going to 25 mg the fatigue I felt became debilitating.  Everything was an extreme effort even walking from one room to another.

    After  splitting the dose and with about a good week of time time I felt normal again and no longer feel any fatigue.  This leads me to think whether we go up or down on the dose our body needs adjustment time and perhaps increases also shouldn't be so drastic and taken more slowly.

  • Posted

    I am dealing with the same thing pretty much.  3 times in the last 8 months have tried to reduce below 8 mg to 7 or 7.5 and each time have hit a road block.  Presently back up to 8 mg and probably could benefit by going up a little more but really don't want to backtrack anymore than have to.  My rheumatologist suggested that I stay at 8 mg for a few months to get things stabilized again.   I have been dealing with fatigue and no get up and go for sure.  My rheumatologist suggested the fatigue is due to steroid withdrawal and pmr relapse combination.  I really appreciate Eileen's response explaining some of the detail of the adrenal function. Better explanation than from my rheumatologist.  Good luck and better health.
    • Posted

      Do ask your doctor to carry out a synacthen or adrenal function test - one too many is better than one too few!

      However - in the first few years I was on pred I got stuck at 8.5mg, I was fine there, at 8mg I wasn't. Then I had a major flare and was back to 20mg Medrol. I switched to Lodotra, a delayed release form of prednisone rather than the methyl prednisolone, immediately managed well with 15mg and have reduced to 5mg with no problems since. Different pred formulation, yes, but I also used the "Dead slow and nearly stop" way of reducing, spreading a 1mg drop in dose over about 5 weeks. Others have also found they can get lower by doing that rather than going from every day one dose to every day a new dose in a day or two. 

      But anything from 8mg down is a "physiological dose" - what your body makes anyway - and most doctors don't panic about it.

    • Posted

      I don't know how old you are, but (at 76) my get up and go, got up an went quite a time ago.  Thanks PMR!
    • Posted

      Thanks for the reply. Great information always. I hadn't heard of that test but will look into it and discuss with my rheumy..she is often surprised when I bring up stuff from this forum. By the way I am male 63 and in US.

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