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PMRGCAuk
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Fatigue

I reduce my prednisolone to 10mgs just two weeks ago but this last week I have had such chronic fatigue and could literally fall asleep standing up. I only work mornings but am really struggling with even this atm. Could it be related to the reduction in steroids. I’m not sleeping any worse or better than normal, I always sleep rubbish and have done for years but this fatigue is really starting to affect me. Would be grateful for any advice.

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Yes, sounds about right. Ten may be a bit high for this effect to occur but, as PMRpro says, if you metabolize only a percentage of your pred you may well have reached the physiologic dose where your adrenal glands have to start to pull their weight again. Heed the warning and slow your taper schedule down to give them a chance to catch up. This effect hit me at 7 mg. Deathly fatigue I think we call it.

I take one of my calcium doses with a little snack near bedtime and find this has virtually eliminated my lifelong intermittent insomnia. Maybe you can find a similar ritual to help you? I am still, months into this, nodding off just before the point of a documentary is reached, or the criminal unmasked..... I even fell asleep in choir one evening. 😲

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Lol nearly fell asleep at my desk this morning as I was waiting for something to print. If someone hadn’t spoken to me I’m sure I would have been asleep.

Ty. I had intended to taper really slowly once I hit 10mgs as last time I got this low I had to increase it to 12.5mgs as the pains came back. On next reduction will only reduce by 0.5mgs.

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Are you using the dead slow nearly stop method?

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I went from 15mg to 12.5 then to 10. But I intended to take the next drop really slow as I know this is when it starts to get tough. I followed a taper regime I found I think it was on here. But have looked on so many sites can’t be sure. Doesn’t help that my RD hasn’t been under control since I was diagnosed 2 years ago. I’m hoping the biological I started will at last work. Would just like to have one day when I feel near normal again. Oh well ce la vie

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Oh gosh me too. One day I will re- visit all the box sets I've slept through!

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It's really annoying. Much of our tv originates in the Eastern time zone, but I live in the Atlantic one, so many of the things which interest me are an hour later for us. There was a fascinating program about Gobekli Tepe the other evening, but I snoozed through most of it.

I could watch it after all....

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Where are you Heron? For some reason I thought you were in Canada but are you in Australia?

We got a smart TV so we can watch things early on catch up. Still nod off though, especially if it's soothing like Blue Planet 11.

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In Nova Scotia, East coast of Canada. Same time zone as parts of South America and Caribbean! I'm too cheap to pay for the dvr function of our cable service.

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Heron, so I was right in my first assumption. You are Canadian. You are missing a lot of programmes to sleep through.

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I get all the channels, just too cheap to record them for later viewing. 😁 But can be viewed on internet, if on a Canadian channel, except there's just so much time you want to waste watching, or falling asleep in front of, tv!

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Blue Planet ll fantastic filming, kept me awake nicely 🤗😎😀

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How fascinating, still awake! 💥

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How do you know if fatigue is caused by the poly or the withdrawal from prednisone? Or does ones body get prednisone resistant?

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I think if you withdraw from pred too quickly the PMR causes the fatigue I would think anyway. But I’m sure the aunties will be able to confirm or correct me.

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I think mine is caused by withdrawal from prednisone as one symptom I didn't have pre-diagnosis was fatigue. I didn't reduce quickly although I was able to drop in double quick time from 15 to 10, but after that never more than 1 mg per month and as the dose lowered considerably slower than that. Fatigue from 7, but except for the occasional moments when I've definitely been too active it's much better now than it was then, nearly two years ago. As long as I show no other symptoms of adrenal insufficiency I will never increase pred for any reason other than increased pain.

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Fatigue has taken over me too! Fell asleep while the dentist was drilling, can’t make 5 minutes into a show, must do everything before noon!

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It hit me at 11am yesterday and starting to feel it now.

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I have been struggling with this deadly fatigue lately too. I feel like an old horse sleeping on my feet, so I know what you mean. I put it down to trying to get down to 6 mgs and my body refusing to play in many ways. I took an extra 1 mg yesterday afternoon, it stopped me from feeling awful ( headache, flu-ey) it also stopped me from feeling so tired in the afternoon, in particular. I wondered if I had hit upon something, so I did it again today, 6 mgs early morning and 1 mg at about 3 pm and again I feel more awake!

Of course I'll do it tomorrow and it won't work, but I wonder if there is something to be said for a split dose to get you through the day? Or was this just a fluke?

I hope that make sense but I am not nodding off, as usual.

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That sounds worth a try. I have been waking with a headache that goes once I take my pred in the morning. So maybe I will try splitting the dose. Ty. Hope it continues to work for you

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I had the deathly fatigue at 10mg this time last year. Because the PMR pain had not come back I did not count it as a flare, but when I slowly went down to 9mg by January I felt even more dead, and someone on this forum suggested I went up in dose a bit, especially as I wasn’t sleeping much and had awful sweats. Went up to 11, then 12.5 then 15mg before I felt reasonably well, and have then done a DSNS taper and am nearly back to 9.5 mg.

There was always still a need to pace myself though, and now that I have retired, i can have a daytime sleep if I need it. I hardly ever feel ‘deathly’

To recap, my ‘flare ‘ symptoms might not include pain, but seem to include deathly fatigue, night sweats and trouble sleeping. (Just in case you are similar to me, might it make sense to try going up in dos3 a bit for a few days and see how you feel)

Doing the DSNS method I can watch v carefully ALL these symptoms, and keep a detailed diary so I can see any pattern emerging.

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Ty that is exactly how I feel. The hot flushes are horrendous ATM. I don't sleep well anyway. Think I may increase back to 12.5 and see how I feel and work from there. Last time I hit 10 I had to go back to 15 again. Will try that tomorrow and give it a couple of days and see how I go. Thanks for that

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I wish you the very best.

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Fatigue was one of my worst symptoms, after the pain reduced.

I found drinking a small cup of coffee (4oz), in the afternoons (NOT expresso... just mild-caffeine coffee) helped my evenings be a little less snoozy.

Worth a try😊. Jerri

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I tend to drink tea at work but had a coffee when I got home this afternoon and have been fine this evening. Just hot flushes got worse. Lol seems I can’t win

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I was out and about and felt too exhausted to get home, fortunately my husband was working from home and could fetch me in the car. I waited in a cafe and had a cup of green tea, it revived me completely by the time he came, I don't think tea or coffee would have. I could have carried on, my son swears by it.

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Please get checked for Sleep Apnoea.

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I know I don’t have that because it would require me to sleep which I do very little of anyway lol. It’s fatigue I never had like this until I got this stupid illness.

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To be honest Tracy, I have experienced just this. It`s scary. Total fatigue. I`m at the present covering my situation with co-codamol until I meet a consultant on the 13th. However, 2 of my GP`s have warned against reducing steroids should I be on them, as it has a definite effect on my blood pressure. I am told by them that reducing steroids too quickly does have a bad effect on blood pressure. Dropping big amounts at a time without supervision, is a bad practice.

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I know. Rheumy has told me to start reducing but every time I try and get to 10mgs it all comes back again. Been on them since March and really would like to get them reduced but it doesn’t seem to be working. Starting to feel frustrated by it now.

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Tracy, looking through many of the scripts donated on here, many have been in your situation for 3 years or more. There doesn`t appear to be a rule of thumb which suits all. Whatever suits your relief is what you want, I would have thought, otherwise there seems to be no reason to have medication.

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9mg . . . zzzzzzzzzzzzzzzzz

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This discussion is very interesting because I have reduced Pred to 8mg for one week after a month at 9mg and previously at 10mg,12mg and 15 mg. but I am so desperately tired and very woolly/headed. This makes me think that I might feel better if I go back up to 9mg?

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Started 40mg pred about a year ago, now 9mg. 'Desperately tired and very wooly-headed' describes me much of the time, these days. The muscle weakness is not as bad as at high doses, but the desperate tiredness rarely goes - sometimes not so bad, sometimes overwhelming, but always there. Reducing v v slowly, half a mg at a time. Dread to think what I'd be like if I reduced any faster than that.

Muscle weakness definitely improving, though still much clumsier than I used to be. But, watching 'Hebrides' this afternoon, an infectious bit of ceilidh music came on and without thinking I jumped up to 'join in'. Rats! Discovered I can't dance either, now. Where will it end!

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Reassuring to know that we are all in the same boat, just need a cure!

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Yes it's due to reduced pred. I'm feeling the same - I'm luckily retired so I can go to bed early and get up when I like!! It's a bugger!! Good to reduce the pred but the fatigue is not so good.

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My feelings exactly but I want to enjoy my retirement !

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Find something non-stressful to do during these months of healing and recovery. I take a drawing class when it's offered and find I'm wiped at the end of the three hours, but I love it and in the end I'm all the better for the effort.

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Yes good idea and one has to live!

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