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Fatigue when reducing

Posted , 13 users are following.

lbh
lbh

Hi, I wondered if it is common to feel a lot more tired and in need of more sleep when reducing. I have reached 8mg using dsns (much to the annoyance of my rheumatologist). This is my 3rd attempt to get to 8mg and it seems to be successful, hurrah - in that I am not particularly stiff and would not say I have any recurrence of symptoms (unlike my previous 2 attempts). I have noticed however that I do not have anywhere near the same energy levels (they are manageable but I would prefer more). I have been at 8mg for 9 days now and will wait another week or so before I start dsns down to 7.5mg. I was diagnosed May 2018 and started on 15mg. Thanks for your input.

0 likes, 7 replies

7 Replies

  • maureen49480
    maureen49480 lbh

    Edited

    I wish I could sleep I am awake half the night. I am still on 10 mlg of pred, having reduced reasonably easily since December.

    I do find my energy levels are very low.I have to do one thing and then sit and rest before I can get going again particularly in the mornings.

    My GP doesnt want me to reduce too quickly now.

    Bloods have improved tremendously so hopeful with new diet and lowering meds I can soon get through this. Positive thinking haha.

  • Anhaga
    Anhaga lbh

    Edited

    You are approaching the level at which your adrenal glands have to start picking up their share of cortisol production again. I found a little flare I had a couple of years ago seemed to set me back considerably when it came to fatigue management and I have always suspected it was because I had to increase my pred again for a while. I wonder if that is true for you as well, as you say you have been to 8 before, with not so great results. I think we just have to give the adrenals more time. This time you really mean it, you are not going up again even if you have to hang around 8 a little longer, and eventually the adrenals will get the message. I'm afraid we can do nothing about the adrenals except grin and bear it, and continue to taper according to the PMR symptoms.

    I'm very pleased the DSNS method has been helping you. I don't know what I'd have done without it. And shame on your rheumatologist for not supporting you. Do these people think we want to be on pred for ages? 🙄

  • EileenH
    EileenH lbh

    Edited

    The amount of red you absorb varies from 50% to 90% of the oral dose. #so if you are a 50% person - you aren't getting a massive dose and are round about the point at which your adrenal function isn't quite as much as would be ideal. Fatigue is common.

  • bob03667
    bob03667 lbh

    Edited

    Thanks goodness I work from home and have a flexible work schedule so I can take a nap almost every day. Taking naps is one of the rewards of making it to age 73. I'm energized in the morning and once again after my afternoon nap.

  • BettyE
    BettyE lbh

    Edited

    I can't remember whether I was tired just when reducing or most of the time on Pred. but I do remember that, having got to zero, ( it took five years ) my normal energy levels did eventually return.... not in a rush but I became aware that I was gradually able to resume normal life. It was not instantaneous; would say 15 -18 months.

  • TheRaven
    TheRaven lbh

    Edited

    As others have said, the fatigue isn't uncommon but does vary from person to person. It started hitting me at the 6.5 mg level. I find that each time I get to the end of a DSNS reduction step, that's when I have my most intense fatigue. I wait a while before starting my next reduction "step" and that seems to help but doesn't eliminate the fatigue. I got down to 4.5 mg a couple weeks ago and will start the next reduction when it feels right. I'm 3.5 years into this PMR party, age 65 and still working 40-50 hour weeks, so I'm very cautious about getting too fatigued. Like you, I'm in no rush! Quality of life is what it's all about. Good for you in dealing with your rheumy! Best of luck to you.

  • Michdonn
    Michdonn lbh

    Edited

    Ibh, that 7 to 8 range was very hard for me. I broke it using DSNS in 0.5 steps and stabilizing for a week or so after complete cycle. And yes I was fatigue around those levels and had a couple of flares. Currently on 2 tapering to 1.5 mg using the same method. Good luck on the rest of your PMR journey. Try to stay active, positive and smile. I believe it helps!🙂

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