Probably a "piece of string" type question, but what has been your experience of the time it takes to get energy, get-up-and-go, and oomph back to age appropriate levels when down to low doses of Pred? I realise we're getting no younger as this condition plays out, that it's probably a pipe dream hoping to completely recover previous form (apart from some athletic exceptions) and I know patience is the name of the game, but has anyone been able to get back to satisfactory energy levels when in the final stretch and afterwards? If so, how long did it take?
How long does the deathly fatigue phase tend to l... - PMRGCAuk
How long does the deathly fatigue phase tend to last when adrenals are kicking in at lower doses of Pred?
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Dochaz
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DorsetLadyPMRGCAuk volunteer
Definitely how long is a piece of string … mine took about 8 months whilst tapering down from 6mg down to 3mg…,
Some struggle a lot more - and it can still take up to a year after coming off Pred completing for them to be 100%.,, but they get there eventually.
Pleased to say I have oomph back - albeit a few years older etc….
So, DL, after 3mg you began to feel more energetic? I'm down to 2mg (almost a month on that dose) and still don't feel like my previous self. I can get through most days reasonably well, but no way am I operational after 9 pm!
Most definitely…. But then I’d only had seemingly random bouts of fatigue anyway, not full on days of it like some do.
PMRproAmbassador
It is a bit of string I fear!!!
Some people never experience it, others just daunder through it and come out the other end and others are flattened. Most people I know who got to the other side of pred have continued their domestic lives much as pre-PMR. One is still gardening and living independently, stacking logs, at 90, She is in a better state than me, 20 years her junior!!
You guessed it, there is a piece of string involved. It took me a long time but I got there in the end. I never know what to say about timescales because depending on the person, it could be a ray of hope or a disheartening blow. It is so dependent on the person, their life, physical health and constitution and how much their adrenal axis was suppressed. I had the best part of a year feeling pretty grim, after which I had good days interspersed with bad ones which could be unpredictable. I stopped Pred in August 2020 and would say that I felt I had turned a corner to adrenal normality in April this year. However, I have been hit with Covid a number of times and don’t know if that has slowed the recovery. I am not the old me 6+ years from diagnosis but then that’s a long time for the body and there has been plenty of water under the bridge that I have had to contend with.
I am so well adapted part of me will miss the mandatory naps and careful pacing. - a bit concerning. I get the occasional hour when I feel normal. Never much longer. I hope it’s a good sign.
I think I might carry on with the occasional naps when I 'recover' as I'm getting to like them!
I think in general it is often months rather than days or weeks, but you may be lucky and how deathly the fatigue is!!
I'm down to 3mgs and still experiencing extreme fatigue at times and extreme tiredness the rest of the time. No strength or stamina particularly yet.
Same for me, Kendrew. Also, paradoxically, falling asleep on my feet at 9 pm and then tossing and turning in bed until 1 or 2 in the morning with my brain whizzing and only managing to doze every so often until it's time to get up and start over 😕. Hoping this will eventually get better for both of us and anyone else going through the same.
I frequently doze off on sofa and feel so sleepy but as soon as I move upstairs to bed I can't drift off either. Like uou I'll be in and out of light, unsettled sleep. If I've been awake all night I usually have a better night the next night. Bizarre.
Same here - I have a regular bedtime, nothing changes, but some nights I can lie in bed about 11pm and realise this is a 3am night! And I can be falling asleep on the sofa but I get up.walk to the bedroom, and by the time I lie down I am wide awake. No naps ...
Its so frustrating when you just don't seem to be able to take control of your sleep patterns. Its frequently after a very busy, tiring day that I experience the completely sleepless nights! Makes no sense!..... but then little about this condition does!!
Actually it does make some sense -after a busy day your brain is wired….. and it takes more to make it and your body relax .. and what about when your children were over-tired -how difficult was it to get them to sleep!
How very true. I hadn't quite thought of it like that. Yes...I can see how that makes sense.Prof Dasgupta wanted me on amitriptyline to make me sleep but I refused as didn't want to add another drug into the mix.
Now that I too don't have the worry of work the next morning, I don't stress about a sleepless night anymore....of course I still understand the importance of sleep but sometimes you can't have everything that you probably should. You have to make compromises dont you,?
Yes you do….. and I was lucky Pred didn’t affect my sleep too badly, but since then osteoarthritis did before replacements - and I occasionally get a bad night nowadays. But fortunately few and far between….know I’m lucky… ☺️
I really try and count my blessings and focus on the positives too. There's certain things I can no longer do (currently) but so much I still can do. 🥳
I could have written any of these posts, it is my pattern too. My body does compensate on its own, without me doing anything. As I lie awake, I just trust that I will sleep the next night or so - for ages.
Same for me too. And I had 5 months off pred this year when the DF did not get any better. There is also a sudden and perceptible crash at about midday. The evening falling asleep in the evening and staying awake all night did not change. In the end, I think it's not just the pred, but also the underlying disease which causes an unhelpful daily rhythm.
Last night I got up finally at 2am and emptied the dishwasher and put a load in the dryer. Back in bed at 3am finally turned tv on so my mind wouldn’t remind me of my problems asleeep by 3:30am. Think I’ll try cleaning more often than wasting time thinking and tossing. Hope it gets better for all of us🙏
Dear Dochaz. I hit the wall regularly between 2 and 4 and my advice is take the nap and hope for an energetic morning. I am 74. This has been going on well before I started reducing steroids. Good luck!
I'm on 5 going to 4its a emotional wrecking ball
I’m on my third decrease from 5mg in 2 years. But each time I’ve had other illnesses (new ones) join in & taken Dr’s advice to go back to 5mg. Now I’m sticking it out at 2mg. Been there for four months. Getting up is a struggle. When I’m up & dressed, the first thing I want to do is sit down! I’ve never napped during the day & if I do I have dreadful nightmares & awake feeling like it’s 2am!! Determined but fedup. So, you see, lots of us are in the same boat, but not the same boat ie it affects us each differently!
I just got to 5 by mistake. Was on 7 and messed up my pill bottles and was taking 1s instead of a 5. Finally figured it out after days of extreme pain but by then I was on 2 mg. Too scared to stay on that so bumped up to 5. I’m sitting at this for a long while. Maybe until January. Best to all of us!
Sometimes that’s the best way, I reckon! I don’t think it makes any difference if just for 1 day ir two…but it soon does!
I think sleeping through the night for older people is a pipe dream even without Pred in the mix. I know of so many who tell the same tale. As soon as they get into bed their brain whizzes into action. Mine too. All my life, my dip in energy is at 3pm. I never suffered the chronic DF while tapering but did have fatigue and muscle weakness. I suppose it's all relative isn't it, some people struggle more than others. You have to push yourself but know your own limits.
It is only very recently I haven't slept through the night - obviously while my husband was ill I didn't but after his death I was back to sleeping through - no toilet breaks! Then some months ago I started having odd night where I didn't go to sleep and had to get up to go to the loo. But last night I went to sleep before midnight and woke at 8.15!
PMRpro, lucky you! For me it's at least one, and more usually two loo breaks each night. It gets very wearing after a while. I'd love to sleep all the way through the night, but currently that doesn't seem possible.
As to the inability to sleep at night. Many, many years ago I had a girlfriend (she was a psychologist!) who told me that she used to worry about not sleeping, but then her boss advised her not to worry about it. So she didn't, and found that more often than not, just the decision to relax and not worry, was enough to send her off to sleep anyway.
The time OH was ill was awful - even besides the getting up to him, I lay awake in case I didn't hear him. Was worse then when the girls were babies and wanting night feeds!
Easier said than done, trying not to stress about getting back to sleep when it's 3 am. I usually read for a while, which generally gets me nodding off until I put the kindle down and brain is once again on full alert. I have to resort to a half tablet of Zopiclone once or twice a week just to give me some respite.
Not for me it isn’t ….get a good 8 hours….. 💤..
.. only time I didn’t was before GCA diagnosed and arthritic joints replaced….
I agree with so many. We are all so different including our journey. My journey was 8.5 yrs never a flare but pmr was entrenched so Mt tapper was slow.
I had sever adrenal insufficiency boarding crisis so the 1st 2 months off prednisone was horrific bordering running to emergency. I couldn't move.
It's been 10 months and I have more good days in the summer than in Canada's rainy cold fall. It's getting better and I'm slowly loosing the weight I gained which makes things better. I can see it taking longer for me but not necessarily for others.
Don't give up.. for me I'm now 9 yrs older and as we age so does energy so I feel I must be realistic.
Best of luck
Hi Dochaz! Mine was really bad around the 6mg mark and lasted for around a year when I was down to 3 mgs. I feel PMR and Pred control us, so I just accepted it. I was just so happy I was pain and stiffness free. Keep smiling!
How helpful ALL the above comments are! Thanks to all who have written in. I can relate to just about all of them. It is knowing that I'm not alone, that others are experiencing the same challenges that makes this forum so wonderful. I do take 2 Amytryptiline to help me sleep, it also helps relax the bladder so those trips to the loo are cut down. I think the general advice not to worry about sleeplessness is key and the fact that most of us are no longer working helps. I do love my daytime nap though and can't do without it. I don't actually drop off but send my brain into a different zone. We all need to listen to our own bodies, not compare with others, whilst still knowing that we're all experiencing the idiosyncrasies of PMR as interpreted by our own unique circumstances. Here's to everyone navigating, deathly fatigue, tapering and insomnia. May the Force be with us all......
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