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
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 ...
Living with chronic pain -
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.
This is just my opinion but I went through an overwhelming fatigue stage and I don't think it had anything to do with PMR. I only say that because I took pred daily for more than 12 years for PMR which was diagnosed at the age of 52. Inflammatory arthritis was a longstanding problem since the age of 32. The first 6-8 years of PMR weren't overly difficult so long as I took pred at about 3 a.m.
I always woke up at 3 a.m. and felt rubbish. Pain at that time of day was also a problem. I would wake up and wonder how I would be able to go to work by 7 a.m. I would occasionally decide to call in sick at 3 a.m. However, if I took my pred dose by 3 a.m. I would feel fine by 7 a.m and then regret my decision that I called in sick.
Eventually, I learned that splitting my dose alleviated the need to decide what to do at 3 a.m. Taking the smaller 1/3 of my total dose before going to bed would allow me to get through the night. Then taking 2/3 of my dose prior to going to work allowed me to maintain a relatively "normal" lifestyle. I continued to work a demanding job. I can't say fatigue was ever an "overwhelming" problem during this time.
Overwhelming fatigue did become a problem during the last 2-5 years of PMR. By that time, I had managed to get to a lower dose of pred. I had a series of surgeries that partially corrected some major problem areas. The pain I had from multiple areas of my body was surgically alleviated and I was able to taper down my pred dose. I think having multiple surgeries in a relatively short period of time contributed to the overwhelming fatigue. I think tapering down from 35 mg to "only" 15 mg was a bigger reason for my fatigue. The fatigue got worse and worse when I was started on a biologic and eventually I was able to taper off prednisone entirely. I actually retired at the age of 62 because of overwhelming fatigue and not because of pain from PMR.
I have been off pred for more than a year now. I can say fatigue is not a major problem anymore. I am still hampered somewhat from arthritis and some other "known" problems. I recently commented to my GP when he asked me about pain. I confessed to still having some pain but there was something about "knowing" what was causing it that makes a huge difference. Also, not having to cope with overwhelming fatigue has given me enough energy to exercise and improve my overall well being. Adrenal insufficiency has resolved too which I think was the most important factor in resolving the problem with overwhelming fatigue.
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).
I have come to realize that there is PMR fatigue and then there is Fatigue with a capital F. Or, if you prefer, FATIGUE in all caps. I've had all three at various stages but I'm pretty sure the one in all caps was adrenal insufficiency combined with being deconditioned. Being short of breath all the time was another factor that wasn't helpful.
My low point was having to climb a flight of stairs (12 steps) and needing to stop and rest halfway before doing the second half.. Then there were days where I mostly slept for 24 hours with absolutely no energy in order to recover from the previous day of doing next to nothing.
That happened somewhat gradually over my 12 years of PMR. I can now do an hour walk AND an hour of working out with a personal trainer/physical therapist and still have energy to spare. My conditioning still isn't great but my recovery time is more like a few minutes instead of 24 hours. Technically, I'm still being treated for PMR and inflammatory arthritis but I'm off prednisone.
Otherwise known as "deathly fatigue"!
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...
Gardening in an upright position got to be impossible. At first I would sit on the ground and scoot around on my derriere. When that got to be exhausting, I would lie down on the ground and do what I could. Eventually, I wouldn't dare getting on the ground unless I knew for sure that someone was around to help me up again. I would take a chair with me and slide myself off the chair and down to the ground. Sometimes getting back onto the chair again and into a sitting position was impossible.
I'm proud to say that I mowed the grass today in less than an hour. At my worst it took 2 or 3 days when I factored in all my rest breaks.
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.
"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.'
Once again, just my opinion. Cortisol is the stress hormone and linked to "fight or flight" response. I'm a bit of a military history buff so in remembrance of the Normandy invasion, the people who stormed those beaches didn't get much feedback either. They miraculously overcame adversity AFTER being wounded or even having an arm or leg blown off --- they just carried on with the fight.
I don't think the body's response to hardship has any limit when the effects of cortisol kicks it. It is meant to be the body's mechanism to overcome extreme adversity. It doesn't surprise me that you don't get any feedback as to how you would feel later. You do have a serious underlying illness but pred just covers that up at least until the pred starts to wear off.
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?
Let me think about this before answering. Were your CRP and ESR ever elevated?
I don't think it matters that much but it does provide a clue about the amount of inflammation present. My levels were always mild to moderately high even on relatively high doses of prednisone. My inflammatory markers were rarely within the normal range but never extremely high like some people report.
My initial thought is that at 3 mg of pred, your natural cortisol (what your adrenals produce) is probably low. You can function at a reduced level in "normal" situations with the 3 mg of prednisone as a "supplement". Then , without any warning, your body senses something stressful. Stressful situations are sometimes stealthy and you don't really know you are being stressed. It doesn't take much. Your body may need more cortisol but your tank is already empty so you run out of gas. That's my thought anyway.
My understanding is that the whole HPA axis thing restores equilibrium. I don't understand how it works normally so it is hard to understand when it goes haywire. Too much and not enough cortisol tends to create huge problems ... that's all I know.
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.
Wow, my ESR never got anywhere near that high even in the beginning ... maybe 60 in the beginning. However, my ESR never got below 30 even on 30 mg of prednisone as my rheumatologist once exclaimed. Both my GP and rheumatologist didn't bother too much with my inflammatory markers after the first couple of years. My markers were only rechecked if I complained of significantly more pain. My pain level correlated pretty well because my ESR would go from 30 back to 60. Generally an ESR of 30 was considered to be good enough and 60 was considered to be too high.
I would guess that you had a good response to whatever pred dose you started on. It seems to be holding has you tapered down to 2.5 mg. Hopefully you won't relapse but given the number of people who relapse at or near the 7 mg level, my guess is that it is related to the adrenals.
That's why I think it is good to get off pred as soon as possible. Once your adrenals get seriously compromised it seems like it is next to impossible to taper off.
I also think that cortisol "regulates" inflammation and doesn't necessarily stop it. I don't think inflammation is a bad thing --- I think it floats around looking for things to fix. That was where my trigeminal neuralgia was such a major problem. When my inflammation levels went up, the electricity in my face went crazy. It was like an inflammation alarm. That problem was never going to be fixed without surgical intervention. It had nothing to do with PMR even though it seemed to be linked. I just needed to take mega doses of pred to quiet the electricity down. I once requested a 100 mg starting dose and my GP called me back to make sure that would be enough!
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.
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.
"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!"
I've had a good relationship with all my doctors --- rheumatologist, ophthalmologist, GP primarily but several other specialists when the need arose --- an endocrinologist lately. I always valued their decisions and we always had a good 2-way form of communication. I don't think I ever came across as an expert or anything but my doctors were always interested in what I had to say. My biggest problem was that they sometimes thought I knew more than I did.
Nobody ever seemed to disbelieve me so they must have thought I was telling it like it was. I did know about symptoms because that is what a nurse is tuned to hear. You get pretty adept at observing and listening for signs and symptoms. However, a diagnosis and treatment was way out of my league.
Whenever my doctors questioned my prednisone use I would refer to myself as a prednisone junkie and then would say that I needed their help! The sad thing was they seemed to understand and recognize the problem but didn't always know how to help.
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.
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!
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!
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 .
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...
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.
I also experience breathlessness but put that down to anaemia of inflammation .
I was anemic too but it was mild. My rheumatologist would just say that anemia comes with the territory. My breathlessness was caused by something else but I still don't know what exactly was causing it.
My awakening was when an emergency room doctor informed me that I had a massive bilateral pulmonary embolism and was sending me to intensive care. I told the doctor that I was a "bit" more short of breath than usual but not too much. I also thought that he was joking because I asked, "shouldn't I be having chest pain or something?" He said yes but I said I felt relatively "normal".
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