Hi everyone, I'm currently on 12mg of prednisone after slowish reduction from 40mg.. But i feel awful everyday, unable to do anything because of fatigue and tiredness. Only just beginning to sleep fairly normal.. God this seems to be going on forever. 😑
Fatigue from prednisolone : Hi everyone, I'm... - PMRGCAuk
Fatigue from prednisolone
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Ambientman
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DorsetLadyPMRGCAuk volunteer
Sorry to hear you are still feeling so rubbish!
I know you have other issues, so is all down to GCA/PMR/Pred...? Or is that too difficult to tell?
Have you felt this way since you started on 40, or has it increased as you have got lower? If latter, wondering if you’ve gone below level of meds actually required.
Sure you aware of pacing etc,.but these posts might remind you - and versusarthritis site is very good for dealing with chronic pain and fatigue etc ...
healthunlocked.com/pmrgcauk...
Living with chronic pain -
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Versusarthritis- versusarthritis.org
PMRproAmbassador
Are you trying to do too much? You are still ill - the pred only relieves the inflammation that causes the symptoms, It has no effect on the actual disease underlying it.
You have my sympathy!
I, too, experience incredible and often overwhelming fatigue - either from the PMR or the prednisolone - and I find it really, really difficult to deal with and to explain to others.
I'm normally a million mile an hour gal. Always busy, always on the go and always trying to fit too much into my day but I'm no longer able to do this and I just don't feel like me. BUT, and it's a big but, there is just no alternative. At work, I was trying to do my f-t job in 0.6 of the hours, was staying later and later each day and had to have two days off to recover because the pain returned and I felt so ill. I've had to admit that I'm not invincible and I'm not superwoman (which came as something of a shock!).
It's intensely frustrating to have to balance your energy budget, especially at times when you feel well. It's even more frustrating to have to do boring stuff like work and going to the supermarket and not have enough energy for the fun stuff like sitting in a pub garden with friends!
Keep your chin up! Learn to listen to your body, to anticipate your energy needs and how much you are able to do and don't be afraid to cancel or rearrange things when you don't have the energy (I've just booked a supermarket shop, which I hate, so that I don't have to waste energy going food shopping tomorrow). I'm trying to be positive and to think that 'all will be well and all will be well and all manner of things will be well' or 'this too will pass' (to quote Mother Julian of Norwich).
Otherwise known as "deathly fatigue"!
And the fatigues in this article - not just for Sjoegrens
sjogrens.org/blog/2019/13-t...
Originally 11 types, have grown over the years!!
Then there were days where I mostly slept for 24 hours with absolutely no energy in order to recover from the previous day.
I've had this after a couple of hours gardening, which felt perfectly OK whilst doing it. Also, anything stressful or that involves the mildest pressure is exhausting beyond anything I could have imagined. Just no reserve of energy to draw on...
Oh yes! I've had fatigue and Fatigue but, luckily, have yet to experience FATIGUE. I'm pleased that you are feeling better and starting to be able to do more.
I can walk for 6 - 8 miles or swim a km as long as I don't have much else to do that day. On working days, I can't manage anything except getting up, going to work and coming home. I have a stressful job which seems to use lots of the steroid dose with the result that I experience considerable tiredness, stiffness and pain on working days that I don't have on other days. During half-term, I had several coffees/meals out which really didn't involve much on my part apart from turning up and have been dismayed at how tiring that has been. I also experience breathlessness but put that down to anaemia of inflammation .
HeronNS in reply to
After first lockdown I started meeting with a couple of other women to discuss books. We met on a Wednesday morning for, at most, 1.5 hours, and in a public place so no one was doing any housework (we actually haven't been socializing generally in my area since beginning of pandemic, just restricted to small consistent groups or "bubbles" between waves). No stress involved. We even met in a place across the street from where I live so I didn't have to walk, or negotiate traffic. The first few times I would come home and promptly fall asleep!
My book group meets in a pub and there was no way of having it there, or shifting it elsewhere, what with all the restrictions. When it resumes, I'll be interested if I experience the same after-effects as you! Pint of Guinness may play a part, too...
I find I'm much better now that I take a tea with me. We are meeting outdoors (covid restrictions in the area) and I wear a mask when I'm not actually drinking my tea. During the winter before second lockdown started in April we met in a fairly large open indoor space, again with masks except when actually drinking. I used to fall asleep afterwards in the days before I decided it wouldn't hurt to have tea with me. This seems to be just enough caffeine that I am still okay when I get home. The others have always had their coffee with them. But one of the others has OA and last week she said at some point she needed to stand up, so I did too, and realized how extremely stiff I was also! I tell you, nothing about this aging process is getting any better!
You've got me wondering how I'll react to drinking beer again, cause that can make you drowsy! Only have weak draught beers, but still... Luckily, the first opportunity I'll have to find out is on the 27th at a friendly club from which I always get a lift home.
Agree about old age. At 2mg, OA is back after a year in which I'd largely forgotten about it...
A little of what you like is good for you - try not to overdo it the first time! Cheers 🍺
Oh I agree - and it's the relaxation I really long for🍻🚬💭
in reply to HeronNS
Related to your friend saying she needed to stand up. I warned my sister- in -law when we started trying outdoor dining for our weekly lunches that I would probably need to stand up occasionally in the middle of the restaurant and the meal. Stiff from OA and PMR. 😒
And now that I think about it, my pred dose was much lower when we first started meeting. I've been tapering again and now starting a cautious drop to 4.5 so it will be interesting to see what happens. I've been at higher doses now for several months. 
_charcoal_ in reply to
Deathly fatigue or FATIGUE didn't arrive, for me, until I was on a low pred dose (3mg) and presumably experiencing some adrenal insufficiency or period of adjustment.
It sounds like you have a lot on your plate! But I do recommend keeping up the walking and swimming, in order not to get out of condition. At 7mg and above, I was able to walk almost as far as you. We're lucky - not everyone can!
Now I'm tapering onto 2mg, FATIGUE and inertia disincline me from going on regular long walks. But I still can, physically. Under lockdown, swimming wasn't possible, I didn't garden much, and my upper body is definitely out of condition now.
Hope this helps, and best wishes to you.
Lol at you "scoot[ing] around on your derrière".
What I'm trying to get my head round is that I'm getting no feedback when I'm gardening as to how I'll feel later. Used to be able to gauge when to stop.
I was weeding, only light use of spade, etc, lot of bobbing up and down, no overloaded bags, felt like no exertion of strength at all. Some OA, etc, afterwards but the systemic fatigue was the problem.
Will try restricting myself to a half hour stint, then three hours physical rest.
Great to hear what you did today and how far you've come! You have admirable perseverence.
Appreciate the Normandy reference.
I think I follow what you've said about cortisol, but if so it doesn't square with my experiences.
My PMR is at a very low level of activity now, with just the occasional burning sensation in the shoulder caps, and upper arm muscle pain / tenderness. This now goes away after several hours, unlike the first 7 months of the illness when tapering was difficult. At 2.5mg pred, CRP=3, ESR=5, which bears out my assessment that this low dose was controlling it.
But the "problem of no feedback" has only happened from 3mg downward; on >=6mg I not only had much more energy, but also was aware if I'd overdone it. No surprises several hours later. Isn't this the opposite way round to your theory?
This is just another example of our adage: "We are all different."
Before treatment, ESR was 130 (June 2020). Don't have record of CRP. At 10mg I had another blood test. Didn't see the results, but rheumatologist wrote to GP that it was now lower (one would hope so).
The rheumatologist said he couldn't account for the fatigue. It wasn't caused by the PMR, which was under control. And the blood test didn't show anything amiss with potassium and magnesium, so there was no obvious indication that the HPA axis wasnt functioning as it should. (Don't understand this bit)
What you say in the last two paras sounds right to me, viz insufficient cortisol for more than relaxed situations, and whole system still out of kilter.
In what sense does he mean the PMR is under control? The pred is only dealing with the inflammation created by the underlying autoimmune disorder - mopping up the puddle created by the dripping tap and not replacing the washer that lets it drip. It has no effect on the underlying actual disease process which continues in the background, leaving the muscles intolerant of acute exercise. In many ways it is similar to trying to exercise/do things when you have a real proper good going attack of influenza - and you wouldn't be surprised at how you feel then would you?
In what sense does he mean the PMR is under control?
Good point. He seems to be assuming that inflammation -> myalgia is all there is to PMR. He said that the blood tests confirmed my claim that the myalgia that had previously tended to re-appear when I tapered had now diminished; the tests showed that 2.5mg was controlling it. I stressed that the PMR was still there, but at a lower level. He said it stutters into life again at times but then goes away again - this was a good description of what I'd just said about the myalgia, but with hindsight I see that we were at cross-purposes because I was referring to the whole illness.
Is it not the case that fatigue and malaise are part of PMR independent of the inflammation -> myalgia element?
It sounds as if he has a fundamental misunderstanding of the whole disease process. The inflammation causes swelling and that causes pain. The fatigue and malaise in PMR may be part of the inflammation effects - but you can have fatigue and malaise in other autoimmune disorders such as lupus without the CRP and ESR being raised, i.e. no significant inflammation. The underlying a/i disorder is what causes the inflammation - but it also causes the other symptoms and that continues even though you are taking enough pred to manage the inflammation. But the pred has no effect on the a/i disorder itself.
What you're saying squares with my experience. The fatigue was part of the a/i disorder from the start, then it was partly offset by the pred, >=6mg in my case. When inflammation increased (a flare) as indicated by myalgia, it led to malaise and greater fatigue unless nipped in the bud. So there's more than one cause of fatigue in PMR itself, prior to entering the adrenal adjustment zone, which I'm now in. And the consultant said he had no explanation for my fatigue!
My previous rheumatologist was excellent but this one's not a patch on her. He's drifting close to the patient-on-pred-is-in-remission-because-no-myalgia camp because, as you say, he doesn't understand the disease. His version of that is: 2 1/2mg is controlling the myalgia, so the PMR is quiescent; drop to 1mg and see what happens. Persuaded him out of that, but I'll see if I can see a different person next time.
Nightmare!!!! It should be a prerequisite for people who want to do rheumatology that that they should have to have a few months with one or other illness!!!
Akh! - taper and "see what happens". My first flare was doctor-induced when my up-to-that-point excellent GP did not renew a prescription because I'd got nicely down to 2, just starting on 1.5, and she told me to go to one and use up my tablets and stop and see what happened. (I never did get to zero this way, I got to a flare and luckily a summer locum who happened to have a chronic disease herself who left copious notes for my errant GP!) This was at about two years after diagnosis. I have since with great difficulty got as low as 1.5 again and even lower since, but it has never stuck. No patient with PMR should ever be told to experiment with dosage and tapering to see what happens. If you aren't ready you aren't ready and that is all there is to it. After decades and decades of use of pred and the stories of countless patients you'd have thought some sense would have rubbed off on the medics! 🙄
Don't be daft - they don't listen to the patients ...
What do they teach them in med school? Or do admission requirements tend to weed out those who would make the best, most healing physicians? I wish there was a way to help them understand about chronic illness, though. Obviously more is needed than that disabling suit we've discussed on here a couple of times.
Admission these days is based greatly on academic achievement - it is still difficult to get in without the right background though that is less "doctor daddy" and more the right ticks on your CV, easily attained by going through the right educational channels.
As for what they teach them at med school - according to a friend who has run med school courses for many years, in the case of physiology, they don't necessarilyTEACH them, they are allowed to form discussion groups...
But don't get me started on the not knowing healthy physiology etc - without which you can't identify the why of pathological physiology.
Thanks so much for this, Heron! When I raised the possibility of a flare, he said, well, we'll deal with that if it happens! Another old chestnut. Over time, I'm getting a clearer idea of how bad he was. Slow initially because after the appt I caught a cold which went to sinusitis, on ABX, unwell. Probably caught it from him, as he took his mask off at one point, and he was the only person I spent any time with. Secondly, I didn't receive the usual copy of the letter summarising the appointment. Requested a copy from the GP and I see he's got various details wrong from my previous (excellent) rheumatologist's notes, eg date of diagnosis two months out, just sloppy. Next appointment isn't till November, so I'll make sure I see someone else.
I seemed have a minor flare trying to go down from 2.5 - being ill anyway made it difficult to tell - so I'm going to sit on this dose until I feel completely stable again. It's good progress after a year, anyway.
It's better than good!
Well exactly. Some medics have to always be in charge. I got to 2.5mg by myself so he has to top it, so to speak😊
The problem with the idea of "dealing with a flare if it happens" is the lived experience of so many people who have found that meddling with a working strategy can be a recipe for disaster. I think because of the nature of pred our body tends to develop a sort of balance with it, and for that reason not only do we have to taper slowly (so body doesn't have a temper tantrum because its prop is being taken away) but we have to avoid disturbing that balance for another reason, which is how very difficult it can be to regain the balance once it has been upset, so often requiring more pred than if we'd just left well enough alone and continued as slowly as we need to. So few if any side effects remain at the 2 or 3 mg level there's no point pushing it. And a doctor who thinks a patient must be in remission if they've successfully tapered that low is simply mistaken. I think this must have been my doctor's feeling, as she'd told me earlier she was happy with me at 3 mg.
Everything you've written is exactly right, I believe; it is, unfortunately, from your experience.
My strategy was working well and I'd have been better off not getting in touch with the Rheumatology Dept, whose bureaucratic cracks I'd fallen through. Wanted to touch base with the very good rheumatologist who turned out to have left.
I still don't understand why doctors who've previously taken Position One: getting down to 2-3mg is a desirable outcome, suddenly switch to Position Two: 2-3mg is so near to zero that you must be in remission; so quickly reduce to zero and come back in 6 months. The attitude of Rheumatology nurses reflects Position One: you're STILL on EIGHT mg!!! You've got down to THREE mg! That's REALLY LOW!
I once requested a 100 mg starting dose and my GP called me back to make sure that would be enough!
Now that's a good doctor-patient relationship! A GP once said to me, "You don't want a doctor, you want a prescription pad!". Well, I'd like one of those too, but not as much I like a good relationship in which the doctor has accurately gauged my abilities to self-assess, self-manage, etc.
Tapering summary
Yes, I had a good response to the starting-dose of 15mg, but it wasn't like a miracle from the Gospels. Subtle at first - the bliss of being able to turn over in bed! - then the legs normalised and, much more slowly, the shoulders. Tapering was dogged by flares for the first 6 months - I imagined it as an "uphill" taper - but the condition did seem to remit at one point, allowing a faster reduction (1/2mg pw, nothing drastic) - a downhill taper. Lots of external obligations in January, so on 7mg throughout; resumed tapering, realised mid-March that I'd had no flares for 3 months and got down to 3mg. No myalgia, but a new type of fatigue!
Regarding getting off pred ASAP, I agree, but everything hangs on the "possible". The PMR's still active atm, discernible for a few hours on some days. After only a year this is par for the course, so I'm hoping that the 2 1/2mg that keeps it in check isn't messing the adrenals up too much. When the PMR activity falls away again, I'll reduce.
Yes, I've usually had good relationships with doctors too, 2-way as you say; what I wrote was unintentionally ambiguous - meant to convey that I value a good doctor-patient relationship over even a prescription pad😊, not that I've never had one. But your being a nurse surely helps? Don't know if it's the NHS, but some consultants and GPs seem to assume patients have zero medical/general knowledge. Eg I saw an ENT man, used the term "Eustachian tubes" and he responded, oh, do you work in the medical field? (genuine, not being sarcastic).
[as a nurse] You get pretty adept at observing and listening for signs and symptoms
And plenty of non-nurses are too. But, mainly in a professional context, I've encountered ppl who were completing unobservant, and oblivious to major medical events. Plus we can all be carried away by our imagination at times, and some can't seem to pull back from that. So doctors must have to gauge the type they're dealing with, and their current mental state.
My current problem here in that my wonderful GP left the practice due to ill-health (!), and locums, lockdown, etc, prevented my making a relationship with someone else. Plus my rheumatologist left and the consultant they wanted me to see instead was in a location I couldn't easily get to. So I ended up seeing a rheumatologist who obviously isn't a PMR specialist. The discussion on this forum has helped me clarify things enormously, and I now have plenty of time to arrange a lift if necessary and see a more suitable doctor.
Gracious! That sounds scary.
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