Tiredness increase

Posted , 10 users are following.

Hi, almost two years since diagnosed. Now on 5mg per day, for a month,

before this I got down to 3mg but has a flare. These last two months have noticed

A real increase in general fatigue/ weariness. I keep busy and Pilates helps with

overall flexibility. I thought this general increase in the feeling really exhausted seemed

strange after so long? Could there be something else, a deficiency or is this the normal.

I know tiredness is a normal but having not suffered too bad till now wondered

if it was a bit off?

Thanks

1 like, 22 replies

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  • Posted

    I have experienced something similar. I wonder if more experienced PMR sufferers could tell us if the weariness gives way to more energy after the adrenals begin to function again and the pred dosage can be further decreased?
  • Posted

    You are at a level of pred where your adrenal glands now have to start to produce the body's own natural corticosteroid: cortisol. While you are on higher doses of pred the whole system recognises there is enough present and doesn't produce more. One of the signs of adrenal insufficiency is increasing fatigue. 

    One top PMR rheumy likes to keep people at 5mg for anything up to 9 months - this is low enough to stimulate the feedback system to encourage cortisol to be made and high enough to let you function fairly well. He finds this makes the rest of the reduction easier for most people.

    Once your adrenal glands are functioning again you feel better - but it can take up to a year after you are totally off pred to feel really well again. It is a slow proces. This is the reason patients on long term steroids should carry a card even during that year because if you are put under severee stress for any reason the adrenal glands can't respond appropriately and you may need a bit extra to tide you over such an event.

    • Posted

      Just to confirm what EileenH said... I have come down to 5mg back last October. When I tried to reduce to 4.5, it did not feel right. Usual symptoms of stiffness and pain, but it was not decreasing as I was tappering using DSNS, so I stopped the reduction. I decided to follow this method of staying at 5mg for a while... until now. This gave body enough time, so when I reduced to 4.5 this time I had no issue. So from October till May I was on the same 5mg dose. No rush, it is not slow as long as it works.
    • Posted

      EileenH, what is the name of the taper down method, where you

      reduce by minimum amount, first week 1 day, second week 2 days

      third week 3 day, etc till on lower dose a week, no problems, start

      al over again. Was that from a German study?

      Thanks again, hey walking 5 miles almost every day!

      Damn I am glad you and my wife got me moving!

    • Posted

      No, just a different version of the Dead Slow approach which someone did themselves. The difference is that the Dead Slow version steadily reduces the gap between the new dose which I think makes more sense than messing about within the 7 days of a week adding days where you inevitably have 2 consecutive days at a fairly early stage. I'm biased, I realise, since I developed Dead Slow over a couple of years as we saw how people struggled at various stages of reduction even when they tried just 1mg at a time. You offer the ody the new dose - and go back to the old one it was happy at. Then offer the new dose again. It doesn't take the body long to accept it and you can also see if your body is going to manage on it without risking a flare. And it is easy to count out.

      As far as I know there have been no studies on how to reduce dose - many doctors just tell patients to do it the way they would for asthma or a chest infection - but there there is no existing ongoing problem once the antibiotics or the bronchodilator medication has worked, it is a completely different scenario.

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

    • Posted

      Michdonn, I've been using the dead slow method since I was at 9 mg.  It's taken over 20 months but I'm now at 1.5 mg and no flares in the meantime.  Slow but it works.  It's also very easy, especialy at the lower dosages, to tweak to one's own needs.  I've actually gone slower since I got to about 5 mg - over a year ago!

    • Posted

      Thank you once again EileenH?, I will read everything I can, always looking to learn . Monday have appointments with both my doctors, now they think I have low sodium, for the third time in the past few years. Eat salt don't eat salt, but I am feeling good couple walks day 4.5 - 5 miles a day. Thanks for your wisdom!

    • Posted

      Thanks Anhaga, sounds like it is the way to go. I am still at 30 mg, so I do have a long way to go. To get to zero is still the target, after this relapse the slower the better! The relapse was worse than the onset. Keep up the good work!
    • Posted

      But don't let the "get to zero" block out sense when you get to the real target "the lowest dose that manages the symptoms as well as the starting dose". It may be zero - but it may not be. Ignoring the reality will lead to trouble.

    • Posted

      Getting to zero is everyone's target, because it means we're in remission!  But that's not something even the best tapering plan can hasten. 

  • Posted

    HI floramac,

    I am also noticing more tiredness as I get lower in dose. Have been at 5mil for almost two months and was hoping to go down to 4 but had to go back up 1 mil at a time this week, started increasing on Monday and today took 7&1/2 because the flare was so bad. Im hoping to stay here for a while then decrease again.

    When I was at 10 mil I had more energy and felt great but really do not want to go back to that if not necessary but if I have to I will.

    I do notice a bit of relief this afternoon, still tired but not as bad. I think that as our body tries to adjust to the different doeses the tiredness is normal.

    Good luck to you.

    Sharon

  • Posted

    When I reached 5 mg I decided to stay there a year due to fatigue. I thought it did not matter if I stayed there as it is a very low dosage. After that I figured out a method to continue to taper. One day new dose two days old dose and repeated that once more. Each time I tapered 0.5 mg. This method was later called Ragnar's method and after some year Eileen stretched out the tapering period and called it the dead slow method. The important thing is to go slowly or very slowly and just taper 0.5 mg down from 5 mg. Then you probably don't get a flare up. I have been lucky to have had 0 pred for over 8 years.

    • Posted

      Was it the fact the fatigue left that you started reducing again? And, once reducing again, in 60 days, you were completely off?

      I've come from 10-7.5 with Eileen's routine. I'm considering going from 7.5-5 next.--that would be Thursday I hadn't planned on staying at 7.5 for any length of time. I'm thinking of, again, using the Eileen Plan. Is the warning sign for which I should look which tells me it isn't working, fatigue? Once at 5, I will use your plan to go on down.

      It was nice to see the originator of THE plan still looking in to help!! Thank you so much.

    • Posted

      It is so long ago so I am not sure but I think the fatigue was gone. Any way I thought I had to try something even if there was no other plan how to do it. I think you should continue with the dead slow method as you have such a low dose and in my opinion time does not matter. It is better to be safe and without flare ups. If you have a flare up it takes longer and it is unpleasant.

      I am still following the forum in a limited way and it is probably important for those who are fighting to reduce to see that it is possible to get to Zero pred if you take it slowly. In the Northeast Forum I started Club Zero where persons who have come to Zero pred tell their experience to encourage those who are fighting to reach Zero.

    • Posted

      You also have to bear in mind that you may have partial adrenal function where you are producing SOME cortisol but not enough, for all sorts of reasons, it isn't just the ability of the glands to produce the cortisol but also the status of a very complex feedback set-up. If that turns out to be the case the fatigue problem may reappear or even not appear until a much lower dose.

      The swings in fatigue or not that Anhaga speaks about could well be due to other factors - as I say there are multiple hormones and organs involved and a change in one for some reason upsets the balance of all the rest.

    • Posted

        Thank you so much, Eileen.  I wanted to let you know that I have successfully come (at first from 10-7.5) from 7.5-5.  My decision on what to do next comes on July 18th, with only 3 7.5 mg. yet to take between now and then.

        I'm thinking, as you say, that beause it isn't too likely that my production of cortisol is enough for me to expect I could be off prednisone sooner than by following the regime I've been following.  That will get me free and clear by somewhere in January (the "0" mg. starting on December 22nd).  I am already noticing weight reduction on the lower dosage and a reduction in fatty build up in my abdominal area.  These things are the issues I've struggled with these past two years; but certainly reaize how blessed I've been for the fact prednisone exists for our condition!.

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