From 30 mg to 11 mg and feeling very drained

I have had Pmr for nearly two years now, my initial dose of 15 mg was upped to 30 mg as I didn't respond as well as the doctors hoped I would on the lower dose.

I have tapered very gradually and am now on 11 mg. Just a little aching in my shoulders in the mornings until the Pred kicks in, but then all seems ok. However, I am very tired all the time. I have only just git down to 11 mg. Should I stay there for a while? I have usually stayed on the lower dose for about 1 month and then slowly started to reduce again, but feel maybe that I should stay here for a bit longer. Your advice would be much appreciated. I also seem to remember reading on this site that it is recommended that you stay on 10 mg for a year, or I am just imagining it?

Hope everyone has a lovely day - wish you all well.

66 Replies

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  • Hi,

    No you're not imagining it - some medical papers do suggest that - to help the adrenal glands begin to wakeup I think. Not sure how many actually do it stay on it that long, but maybe a few months at 11mg would help you.

    If you are very fatigued maybe your natural level for cortisol is slightly on the high side, and you are already getting to the point where life becomes even more difficult. Or maybe your body doesn't get as much benefit from Pred as others, which is maybe why you initial dose wasn't enough.

    A few months at 11mg certainly won't do you any harm, that's for sure. Then hopefully when you try to reduce again, it will be easier.

  • Thank you so much for your prompt reply, much appreciated Dorset Lady - glad the 'brain fog' isn't as bad as I thought it was!

  • No, as DL said, you haven't imagined it. It was recommended in a paper produced by Prof Kirwan a few years ago. His research found that starting patients on, say, 15mg for 6 weeks followed by 12.5mg for another 6 weeks, followed by 10mg for 12 months then reducing by 1mg monthly thereafter, led to fewer flares.

    Although fatigue seems to be par for the course with autoimmune conditions and steroids, it might be worth checking that your Vit D levels are at optimum levels, also your haemoglobin for any signs of iron deficiency.

    Meanwhile, hopefully a longer stretch at 11mgs will help especially as you say you are feeling quite well pain-wise as the day goes on.

  • Hi Dobermanlover

    I can relate - also 2 years into PMR, started at 30mgpd and tapered down to 6-ish +/-, but with difficulty in getting much lower than this during the last 6 months without increased pain and stiffness - very frustrating! I have similar morning symptoms until the pred kicks in..

    After doing a week's quite hard physical work recently, I 'hit the wall' of deathly fatigue for several days afterwards and, so, reluctantly decided to 'up' the daily dose to 7mgpd for a while (approx. 15% higher than for the last couple of months). It certainly made a difference to my symptoms - noticeably less pain and stiffness, and some lightening of the fatigue within a couple of days. Phew...

    Conclusion..? I was pushing my (new, lower) limits both physically AND in terms of the optimum Pred dose to keep the worst of my symptoms under control. Note to self - don't be a hero, pace self and be patient with the preds. :-/

    Some time ago, my rheumy (Dr Zakout) mentioned the idea of staying on a 10mgpd plateau for a year as an alternative to continuous tapering. It makes sense to stay on the lowest possible dosage plateau that just about keeps the symptoms under control (without masking them completely?), and I can't help thinking that this method does take pressure off the sleepy adrenals while they get their act together again, rather than constantly trying to nudge them into action..?

    Also, I wonder if staying on a comfortable plateau Pred-wise might also relieve some of the stress around continuously and relentlessly trying to taper (however gently) according to a notional 'plan' - and the resulting yo-yo effect when things aren't going to plan - which (i.e. stress), in turn, feeds back into the symptoms equation aside from anything else.

    I know it's frustrating to have to increase the pred dose when many of us are trying to reduce to a 'plan'. But, as many here say, Quality of Life and effective Symptoms Management come first in this complex equation.

    On that note, I think I might have just talked myself into upping the preds again for a while, and changing the 'plan'. As they say, a plan is only as effective as the results that it produces, and can always be changed. Plan A, Plan B, Plan C etc...?

    It'll be interesting to get some input from others on this one. Now, who's going to get there first - PMRpro, Polkadotcom or DorsetLady?! I'm ready and waiting - with protective head gear firmly in place! ;-) :-D

    Keep smiling all...

    MB :-)

  • No protective headgear required - but WHY are you trying to reduce to a "Plan"?

  • Maybe! Certainly if he repeats last week!

  • But at least the kitchen and hall are looking like new again :-D

  • Think it's a mindset that is easy to fall into, given the advice from many GPs and Rheumies in terms of risks and side effects of Preds, and also a desire to be pred free eventually. Who wouldn't want to?

    That said, there are plans and plans.. that's why I mentioned A, B, C etc. ;-)

  • I think a plan is imperative. After all, what is DSNS if not a plan? But as I've said a number of times, my little pocket calendar is full of schedule changes, in the beginning it was to taper a bit faster, more recently to slow things down.

  • Well, HeronNS, I was going to say that too (DSNS = a Plan) but didn't want to cause trouble here. I don't like trouble, I go out of my way to avoid it, and anyone who upsets me better watch out because there'll be trouble if they do ;-)

    Blimey, I sound a bit like a certain President elect with a name that rhymes with Forrest Gump... :-D

  • Ha Mark, I think you are chancing your luck with the lovely ladies on this forum :-) Best keep that protective headgear on!! :-) only saying :-) :-) I agree with you though - the best made plans of mice a men etc.......:-)

  • Chancing my luck with lovely ladies? - story of my life Pete! ;-) You've got it in one about plans...

    I seem to remember you saying you're off to Italy next week - have a great trip and catch up soon :-)

  • Many thanks :-)

  • Me, me, me!

    Sad or what! Get a life springs to mind, by height ho, it is what it is.

    You're right in trying to put the 'I must reduce' thought on the back burner sometimes. I think that's what drives many people into to doing so, when the body's not really ready.

    As you rightly say, and I'm always wittering about - it is only a plan, it's not set in stone, so if necessary change it - to address your current situation.

    My GPs initial plan following then BSR guidelines, covered about two & half years, actually turned out to be 4 & half - even with no flares!

    We're all adults used to making our own decisions based on what we've learnt through life - but it seems that when we get PMR or GCA we're apt to forget that and, if not follow what the doc say like sheep, perhaps become a bit unsure of our own ability to think for ourselves. I guess it's the nature of the illness maybe, where we're suddenly confronted with something so alien to our normal self we just lose the ability to think sensibly!

    You obviously threw the pacing advice out the window recently, but I guess we've all done that! Myself included this week - so I can't really nag! Hey why not, course I can, never stopped me before.

    Give your adrenals a chance - stay at 7mg if you feel okay, bit higher if necessary. As herself will no doubt say - "it's not a race! You need what you need!"

    Give yourself a break, enjoy a couple of months at whatever dose you need, and then off you go again.

    Lecture over.

  • Lecture gratefully accepted.. ;-)

  • Me me me... DL, I was only trying to endorse the idea of 'plateauing' (rather than continuously reducing, however gently) since this was Dobermanlover's question, and I have come to the conclusion that it's a good idea.

  • Actually, the "me, me, me" was referring to me, not you! I meant me answering first.....although as I wrote more I wasn't the first.

    Geddit?

  • I'm like "Duuughhh!!!" :-/ Sorry for the misunderstanding DL, geddit now :-)

  • 🤦🏻‍♀️ What are you like!

  • I'm like 'OMG'!!!!!

  • ...(Double 'Like' Now I get your drift in the first couple of lines!) ;-)

  • Either too much vino, or not enough. Paint must have got to your brain!

  • Funny you should mention that. When I was rollering the ceilings I suddenly came-over all tearful. I can only guess it was pent-up emulsion...

  • Michelangelo eat your heart out.

  • I was always fascinated by Murals - or was it Murials?! :-) :-D

  • :-)

  • Or even Muriel's...

  • Careful now... don't give me ideas ;-) :-D

  • That's what I have done, instead of constantly driving myself insane on what dose, I took time to reflect on what is more important to me. I want to be pain free, I am very active at work and leisure, I need this activity in my life so after a long talk with myself have decided to stick with the dosage that works for me, and start a reduction plan after a few months.

    End line is.. I prefer to be pain free than in pain and permanently tired.

    Just a quick note after reading an article on here I now take my pred in the evening, much better than waiting for it to kick in.

  • That makes a lot of sense Suziib. As you say, what matters most? :-)

  • There is a paper from what was the Bristol rheumatology group whose reduction scheme keeps patients at 10mg for a year:

    rcpe.ac.uk/sites/default/fi...

    and at that level I think it is more to allow the cause of the PMR to settle down before reducing further rather than anything to do with the adrenals because theoretically that is a dose above which that should be a factor. 7.5mg is the usual threshold quoted there. As Mark says - it isn't a bad idea to accept where you are rather than pushing a reduction and discovering you need to go back up, risking getting into a yoyo pattern of dose.

    However - you sound as if you may be one of the 50% bioavailability group, meaning you only absorb about half of the pred you take. In which case being at 11mg now is really like being at 6mg for others who are at the other end of the scale with 90% absorbance - and maybe this is your adrenal glands being reluctant to get out of bed.

    Dr Hughes of Chertsey is quite keen on keeping patients at 5mg for some months - and that IS to encourage adrenal function to return. Celtic will vouch for that.

    Logic though will also suggest that if there is any left-over inflammation hanging around it would contribute to the fatigue due to the underlying autoimmune disorder.

  • PMRpro, what you say makes massive sense - especially the influence of what seems to be potentially massive variability in individuals' bio-availability in the efficacy of any tapering plan at any stage?

    It makes me wonder if the usual 'x mgpd' benchmarks by which standard steroid tapering reduction thresholds are introduced and measured (e.g. 'starting dose of 20mgpd' / 'reduce to physiological dose' of +/- 7.5 mgpd' etc) - and that are often discussed here - have any real meaning for those 50% of individuals with PMR / GCA who clearly have widely differing bio-availability for Pred (or other drugs)?

    If I understand things correctly, this real-world margin-of-error of 50% +/- (?) compared with textbook standards for prescribed dosages / linear tapering rates could make a nonsense in terms of many individuals' bio-availability - and have serious implications for the effectiveness of their tapering 'plan' (or whatever we want to call it!).

    Maybe a GP's / Rheumy's assessment of an individual's bio-availability for Preds should be one of the starting points for any initially prescribed dose / 'plan' to taper the Preds?

    But I think I know what you're going to say - 'all about resources..'?!

    MB :-)

  • It doesn't matter in the context of tapering approach - called drug titration. You start with a fairly standard dose (one you know is too low or too high) and then change the dose slowly to find the lowest dose that works well. The numbers are unimportant here - in PMR you start with a dose that is too high for most people, add a bit if it doesn't work well and then taper down to the dose that works for THIS patient. Not the one that works for the man next door or the woman you saw last week.

  • Ah, sorry I forgot about this - you've mentioned it before.

  • Mark, how about that "plan" not just focusing on whether to increase your dose, but instead to place consideration on NOT "doing a week's quite hard physical work" in the future, at least whilst PMR reigns? One day of hard physical work would have floored me let alone a whole week! If I had an extra busy day lined up, I would ensure that each day either side would be left free in my diary - my friend used to call them her duvet days.

    There now, I don't think you need that protective head gear......at the moment!!

  • Oh, but he will, we know that!

  • And so will I if I don't get off here and get the roast under way!!

  • Yep, for sure. How long will it take me to get there?

    Living on your own does have some compensations, I do things in my time nowadays.

  • Well, I suppose I'm fortunate in being able to do as much as I do, unlike some here.

  • ... creeps quietly back behind the sofa with teddy ;-)

  • Maybe you'd have felt better if you hadn't left what is obviously your comfort zone... ;-)

  • Don't be so cruel PMRpro :-(. It's nice and quiet and safe there - unlike the real world. Just me, teddy and my thoughts. Oh yes, and a cunning plan.... ;-) :-D

  • Exactly - might have saved you from too much physical expenditure...

    You never mentioned Baldrick as a friend before?

  • I only mix in the best of company PMRpro... :-)

  • What are you doing here then???? ;-)

  • Lovely, touchee! :-D

    Reminds me of the old Groucho Marx gag. It goes: "I wouldn't want to join any club that would accept me as a member..".

    Happy days.. :-)

  • Our lovely Doberman does that when she's sulky!

  • What - retreats or emerges? Must be a large sofa...

  • Either really - and yes it is a large one - it has to be as she is usually asleep on it!

  • A bit of both maybe..?

    As for the head gear ... phew :-)

  • Thanks Celtic - ok, I give in to your better judgement and will try to do better in future :-).

    Only thing is, I would feel silly wearing just a duvet at the supermarket (I have an image to maintain).

    Can you suggest any ways to dress things up a bit and make my 'duvet day' look stylish when I'm out and about?! ;-)

  • Oh, pleeeease not "JUST" a duvet, Mark!!

  • Finest Hungarian Goose Feather and Down of course! ;-)

  • Thank you Celtic, DorsetLady, PMRPro and Markbenjamin57 for your input, very greatly appreciated. I will stay on 11 mg for 3 months and see how I feel then, I would like to get down to ten after that in 1/2 mg stages if possible, but will see how it goes. This site is like a tonic - I felt really depressed this morning now you have all given me the strength to do what common sense was telling me. Mustn't forget the wonderful support my husband is - he has to put up with me feeling such a useless being at times!

  • There is always something new, as this is the first I'd heard, or at least registered, that a year at 10 mg is recommended. Glad I didn't have to do that.

    This business of fatigue is a bit of a conundrum. I didn't have PMR-related fatigue. But when tapering to 7 mg I found I'd gone sort of "flat" which I now know is fatigue. This has been with me off and on ever since, although I do have days now when I feel nearly normal! However recently I had a day which, although pleasant, caused me to completely crash. I decided, after thinking about why, that probably my adrenal glands are functioning but not up to par and they didn't provide me with the extra amount of cortisol I must have needed when in a fun but unusual therefore stressful social situation. The only answer really is to be careful to give oneself adequate rest and recovery time, no matter what the activity has been, even a sociable luncheon with friends demands recovery time afterwards. Maybe there's something in your life which demands you need somewhat more than 11 mg pred and your adrenals are not supplying it. My personal choice has always been to tolerate the fatigue in the interests of lowering pred dosage and hopefully nudging adrenals into activity.

  • HeronNS, I think we're on a wavelength here. I can totally identify with all you say in your post, especially tolerating fatigue etc (within reason) in the same interests.

    That said, everyone is different and I guess this is one of the biggest conundrums for many of us with PMR and Pred tapering: whether to keep 'nudging' down (e.g. DSNS) and find out by trial and error, or to err on the safe side and 'plateau' so as to avoid or minimise 'error'. Or, some hybrid of both approaches? To be fair, DSNS accommodates this in its methodology.

    But... chuck the combination of other variables into the equation (the un-predictable course of PMR itself, external factors such as stress, physical exertion, comorbidities, even the weather?), which can upset the 'plan', and it can be a confusing and unpredictable process for anyone.

    Seems to me that living with PMR and the Preds is very much a case of Risk Management at a number of levels, and not always a very scientific process in this context?

  • My feeling is pain control is tops. In addition to that the fatigue at low levels (I'm now at 2 and part way into a taper to 1.5) has to be managed, too, and that, unfortunately, is a result of the prednisone. So definitely a balancing act. Unless I develop serious symptoms of adrenal insufficiency I think I'll keep on managing my bouts of fatigue by being lazy. :)

  • I agree, all about making day to day life as tolerable as possible with PMR / steroid tapering? Defo a balancing act - at all levels... :-)

  • Hi,

    As I said in an answer to a post yesterday, the fatigue can still get you, post Pred, post GCA.

    I had a few busy days last week, supervising builders in my son's house, which entailed driving 50 miles each day for 3 days on the trot, getting up early and fairly late home. Not doing anything much whilst there, but mooching about trying to find somewhere quiet to read a book (no internet connection) - no chance!

    On the fourth day I went shopping in morning, and when I got home promptly collapsed (metaphorically) in the chair and fell asleep for 2 hours!

    Just reminded me I'm not 100% yet.

  • Well done DL, glad it's business as usual for you despite the ravages of PMR / GCA, and other Life-events that you have so generously shared with us. Thank you :-)

    As for the magical '100%': who amongst us ever lives-up to this idealistic standard - PMR / GCA or otherwise?! Fatigue is natural in life, like night and day.

    Lesson? Roll with it and accept that Life / Destiny throw many challenges at us despite our best efforts to avoid them. It's how we cope with them that matters most - for ourselves and others in our / their precious lives.

    Blimey, that was philosophical!

    MB :-)

  • Yep, certainly was. Mind I've learnt that lesson well, and still bounce back for more!

    My 100% may not be everybody's 100%, but I know what's mine!

    At least I didn't say in the current parlance, when asked how they did, so many sportspeople mutter 'yeah, well, I give it 110%, that's all I can do!"

    Aargh! Sets my teeth on edge every time! And yes, I do still have my own, thank you.

  • It is a very fine balance between coping and having a 'flair' judging by comments by participants to this site. It is the first time that I have felt pain in my upper arms, hence the request for info from all you far more experienced people. Yes you are right Heron, even though you are doing something that is usually regarded as leisure by 'ordinary' folk, we Pmr people have to view it somewhat differently and rest accordingly afterwards, something that is sometimes hard to remember.

    Thank you all again for your help, don't know what I'd do without this site!

  • "don't know what I'd do without this site!" My sentiments exactly!!! :-)

  • I agree Pete.

    This site is a wealth of trusted and reliable info, an opportunity to compare experiences / opinions with others, and a friendly, sincere and thoughtful 'community' for those of us who also want or need a little support and 'cuddling' through the tough bits.

    And not to forget the fun and humour here (as if I know about these things!).

    MB :-)

  • :-) :-)

  • "humour" what humour?

    Oh You are AWFUL, but I LIKE You...shove! :-)

    :-)

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