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Tiredness. Pred or what?

Posted , 15 users are following.

steve_1
steve_1

I've had PMR for m

ore than a couple of years now and am taking pred, although I haven't managed to get below 7mg.

The trouble I'm having now is that I'm so constantly tired, I can only go about 4 hours before I need to sleep. My question is this, is it the PMR, the pred, a combination of both or something completely different?

1 like, 11 replies

11 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey steve_1

    Posted

    Steve, around the 7mg steroid dose is equivalent to the amount of natural steroid (cortisol) that your adrenal glands make when well but they will have been suppressed by the artificial steroid, and trying to get up to speed again with their natural production.  So as you withdraw Pred around this dose, you will have a shortfall of cortisol until the natural production catches up.  That is probably the reason you are having difficult reducing below 7mg.  Have you tried the very slow tapering regime whereby you reduce by just half a mg on one day of the first week, two of the second, three of the third etc?  If you have and it doesn't work then it simply means you need longer at this dose to control the amount of inflammation still circulating.  The fact that you are so tired could mean that 7mg is not quite sufficient at this stage and you may need to increase the dose to feel better.  There is also the possibility that your adrenal glands are finding it difficult to 'wake up' again, and there is a test available called the Synacthen test which will provide an answer one way or the other.
  • Diana112
    Diana112 steve_1

    Posted

    Hello Steve, What you are experiencing may be fatigue and I think it was Eileen who commented a few weeks ago that autimmune disorders also cause fatigue - way beyond tiredness - you can't go to bed and sleep and it is gone, it is there all the time.  She said at the time the only way to manage the fatigue is pacing and resting appropriately.  Some people may cope better than others but I am with you on this one.  All the best, Diana
  • Anhaga
    Anhaga steve_1

    Posted

    i agree with the others that there is usually a factor of pred withdrawal at about 7 mg.  I've experienced that fatigue at 7 myself, and having it again at 4.  However there could be other factors.  First of all the quality of your rest.  You say you have to sleep frequently, but are you getting a deep enough sleep for at least part of the night? Also have you had your iron checked lately?  
  • dan38655
    dan38655 steve_1

    Posted

    Throughout my two-plus years with pmr, I have experienced somewhat-debilitating fatigue when my dosage was to the low side of what was needed to counter my auto-immune problem.

    Even now, at just 1.5mg/day keeping my symptoms down to a just-tolerable level, I have days where fatigue is a real issue.

    It does help me to take a nap when this occurs, as my minimal dosing also keeps me from getting such a god quality of continuous sleep.

    I would feel much better at 2mg/day, but I am confident that my latest reduction from 2mg to 1.5mg will likely stabilize within a month or two and allow me to start thinking about when my next reduction (to just 1mg) should take place.

    I did take quite a long time for me to get past the range of 5-6mg/day, I spent about a year at that dosing level! 

    Note that I am just 140lbs, so for most people that would correspond to a somewhat higher dosage than 5-6mg/day.

    • nick67069
      nick67069 dan38655

      Posted

      Hi Dan, glad that you are making an attempt to go below 2mg.  Can you expand on what happened while you were at 5-6mg level?  Have you tried to reduce, or you have decided to stay at that level longer because of different reasons? 

      I am at 8-->7.5mg transition ( almost done). But this is so far the hardest reduction I have had.  Some of the PMR like symptoms are resurfacing, although I think it is steroids withdrawal related discomfort ( not really a pain).

  • iellen32
    iellen32 steve_1

    Posted

    Hi, Steve, reading the discussions and the personal experience of each one of us we arrive to the so well known conclusion : each person is a different case, whatever pain, stiffness, tiredness, fatigue, extreme or not....

    As for me - I have CGA , regarding the Pred I already learned my lesson regarding the way a rheumy does the tapering - too much at a time, too fast for the way my system works. Then the consequence is always another flare up. 

    At my best time of the day I walk for the maximum if time I can - my be different everyday, the important is to move and to don't stay sitted longer than one hour.

    B12 and Iron supplement now and then for quite sometime are of a great help.

    Keep safe, keep active, keep your smile and....why not, your Joy!

    Starting  my day exchange experiences with you, hope you have a great one!☘

     

  • JanSP
    JanSP steve_1

    Posted

    Fatigue is a very big problem for me as I decend from 80mg pred for my GCA. I'm at 15mg now. I sleep deeply, I think, for  about 8-9 hours getting up about twice to the bathroom. Then I need a two to three hour nap morning and afternoon. I use a CPAP without oxygen, mask and ear plugs. Unfortunately, even when I wake I'm still exhausted and feel like going back to bed. I know some of it is depression, the almost 60 lbs I've put on and my difficulty breathing with this belly and scoliosis. I don't drink coffee but could the caffine help me? I just don't get much accomplished and it's so frustrating. I'm the one who used to handle the "honey do" list and I liked being a Mrs. Fix It. My husband does the shopping and cooking and helps with the cleaning. We are both retired but I'm retiring way too much.
    • dan38655
      dan38655 JanSP

      Posted

      Caffeine is of little help because when fatigue kicks in there will be very little response from the adrenal glands which become largely inactivated from under-medicated pmr.

      Caffeine will further "tax" the adrenals, such that periods of low energy may become longer and more frequent.

      For what it's worth, I still drink coffee out of habit, and am by now at a very, very low dosage level, but I clearly recall thet when symptoms of fatigue were greatest that caffeine offered much less in the way of any positive effect than it might have normally.

      I do recommend getting outside several times per day if at all possible, as walking outside even very slowly tended to wake me up for a periodic boost to my day.

    • Anhaga
      Anhaga JanSP

      Posted

      I've been getting low level light therapy from a physiotherapist.  After the sessions, certainly at the beginning, I used to be wiped.  So I took to going to a nearby cafe before heading home (I have a short walk, a ferry ride and another short walk in both directions so physio is a lengthy although pleasant activity).  And started to have a coffee after physio.  Never really drank coffee much before, just an occasional treat.  I did find it helpful, but perhaps it was more the fact that I sat down for fifteen minutes and also had a small high protein snack (cheese or nuts).  I usually drink tea when at home.  Personally I don't think you should give up everything that you find enjoyable.  It doesn't hurt to virtually eliminate the simple carbs and the sugars, replacing them with protein and plant foods, but there are too few pleasures in our lives as it is, so what harm is there, really, in a coffee or an occasional glass of wine?  Just avoid the decked out coffees which have more sugar and fat that anyone should eat in a whole day!
  • reggie92967
    reggie92967 steve_1

    Posted

    Steve, I'm in the same boat, my very 1rst trial dose last July, helped immensely for about 8-weeks. I haven't felt that incredible.since. I've gone up, gone down, up, down, up, down on dosage, per Dr's. ?? The fatigue is so bad most days I have to force myself to move, & then must stop to rest way too often. Stiffness, body aching, throbbing pain I feel is reduced, but the no energy, drained feeling, wiped out thing is not. I'm on vit. D & when really must, I have a low dose pain med. which I still break in half & for some reason it helps reduce the horrible fatigue & what I call, the walking dead feeling. The Dr's, think I have trouble defining, identifying, numbering my pain level, but it's likely the pain that is cause of fatigue & no energy ??
    • Anhaga
      Anhaga reggie92967

      Posted

      Reggie you've had a bad time haven't you.  What a shame the dr does not seem to have allowed the pred to do its good before making you reduce.  You really ought to be allowed to take a dose adequate to control the inflammation and then have a very slow, measured reduction.
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