Greetings to my trusty and long suffering Compatriots here.
What do you think about this one..? (reminds me of the lyrics from an R.E.M. song..)
After several months of hovering around 6-7 mgpd Preds with no significant let-up from the usual low level pain, stiffness (and regular pockets of deathly fatigue), for the past couple of weeks I've upped the Preds back to 7.5 mgpd - but again with no significant improvement. So, I was preparing myself to 'up' them again maybe to 10 mgpd despite feeling quite 'woozy', which I attribute to the higher dose of Preds more than anything. Yes, I know it's a trade-off...
Then, as if by magic, sudden and miraculous relief from the morning symptoms (pain, stiffness) for the last couple of days. The difference really is 'Night and Day' (excuse the pun). My body (and brain) feel dramatically more relaxed, none of the mental and physical 'Jangly Frazzledness' - feeling virtually normal and quite energised - I'd forgotten what this is like (this has happened a couple of times on the Journey, independent of anything else).
And... all of this having (maybe a bit adventurously?) decided to ditch the last-thing-at-night / 2 a.m / 4 a.m. 7.5 mg Pred-taking ritual to taking only 5 mg sometime the following morning - just to see if it made any difference. It absolutely has, almost to the point that I feel I could confidently ditch the Preds - or, maybe (more sensibly!), continue at 5 mgpd taken in the morning and see how it goes.
I know this goes against Best Advice for Pred tapering (7.5 to 5.0 = a massive 33% drop)... but my gut-feeling / intuition is telling me that the side-effects of the Preds might be outweighing any benefits at this stage, and / or that my sleepy adrenals are spluttering into action at long last (2-ish years into PMR).
I think I know what the experts here will say - take a bow 'Aunties' - and I take full responsibility for my actions and any consequences.
My main question is: can anyone throw some light on this paradox, i.e. suddenly feeling dramatically better DESPITE / AFTER quite a big and sudden drop in the daily Pred dosage - and has anyone else here experienced the same thing?
Many thanks all
MB
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markbenjamin57
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When I got to 7mg I felt that I did not need pred anymore and felt great. I then went down and at between 3 and 4mg my CRP went up to 132. I am not sure it was all PMR but my GP put me up to 15mg which rather slowed me down.
Thanks piglette, my CRP was initially 56 (as I remember it), and that was attributed to a bout of bacterial pneumonia concurrent with the onset of PMR symptoms. ESR was within a normal range.
I guess that if / when feeling great, its tempting to feel that you are 'out of the woods'? But I'm still intrigued by the possibility that, for some, and at lower levels of inflammation / disease activity, the Pred side effects are worse than the PMR symptoms themselves.
My ESR was a mere 118 when my CRP increased! I think a lot of people find they have more pain when they get to lower levels of pred because of other aches that have been covered up by the pred at higher doses which can muddy the water. I am not aware that pred side effects are worse for some people at lower levels of pred, I get the impression that most people find that they reduce substantially on reduction of pred, which does make sense I suppose.
What you say makes sense. I guess it's a balancing act between getting down to a tolerable level of PMR symptoms with the Preds and coping the side effects of the Preds themselves. Confusing or what?!
Well, that is interesting Mark. I spent over three months chopping and changing between 7.5 and 6.5, and then seven weeks at 6. It was only after that seven weeks at 6 that I started to feel much better, and I guess that was from the adrenals kicking in again.
Subsequently, I got down to 5mg relatively easily via the DSNS method, spent two weeks at 5mg, which went fine, so embarked on the next drop 5 to 4.5 again via DSNS. I'm nearly at the end of that now, but aches and pains are returning a bit. The question is are these psychosomatic, or old age ( I am 77), or PMR related. I have also possibly been doing too much!.
Anyway, as to your dilemma, I think it is just part of pmr's infuriating pattern. You start to feel better, and it kicks you. I just hope it doesn't kick you this time, but I'm not sure I would give it the encouragement of such a big drop as you are thinking of. From what I have been through, it does seem like it is your adrenals that are being kicked into action.
The trouble is one never seems to get a good grip on PMR. It does what it wants to do, not what we want it to do!!!
Good luck, and I hope to read that you continue to feel good; don't try to do too much though.
I think you've got a point about PMR having a mind of its own / the adrenals waking up - and the psychosomatic element too. And I guess age also comes into the equation... and the need for pacing, regardless.
Maybe it gives you a false sense of security to suddenly feel dramatically better. I agree with you, maybe the very time when Caution still rules re. Pred tapering?! Let's see what the 'Veterans' here say
Hey ho, we'll see. I'll update with progress and thanks for your good wishes
I think it's your adrenal glands finally getting into gear - I felt same, albeit at a slightly lower dose- mine were extremely reticent to fire up again!
Hope you continue to feel well, but - you knew there was going to be a but didn't you - don't go "pushing the elephant up the stairs" yet! 🐘
Well, the difference is truly dramatic when / if it's the adrenals waking up again. And a reminder about how rotten you've felt for a long time - but which has become the new 'normal'.
Now, where's that elephant...? (only joking - but I'm up for a bit of car valeting tomorrow)
Thanks for your good wishes - even if I made a miracle recovery, I would never want to be far away from this community. I feel I've made some very good (if remote) friends here.
Hi Dorset lady, don't think my body knows anymore about adrenaline!! I am on my week four guided by you but but awe my body don't like it. Will finish this week 4 though then have to go on 7.5 one day and 7 alternate days, my GCA and PMR have been getting bad again so been on zapain off the doctor for last 4 days as can't cope with pains. Seems like I can't get lower than 7.5 for some reason. My friend said if I were a horse he would shoot me lol lol I agreed !!!
It is lovely though to read how some people on here can go low dose, I wish them so well in this !
Will update again in couple weeks as all I am doing is moaning like Ena Sharpels off coronation street !!!
"have to go on to 7.5/7mg alternate days" - no you don't! You do what your body tells you to do! And if it's resisting then don't do it! If you have PMR/GCA pains then you are not on enough Pred - at the moment.
You will eventually get below 7.5mg - but not until the PMR says so! So don't get disheartened, you just have to go with flow.
Thank you x I need telling lol I try so hard to come down thinking my body will say " ok Margaret you win " !!!!
It is so strange though as I had regular migraines before this started 5 years ago, now none at all !!! At least that's one thing that's gone lol lol and my raynauds in my toes seems to of gone but not my fingers, ahhhh lovely old age ! But then I think of what's happing in the world and mine does not seem so bad ( does really )
You should be using the PRED as the painkiller - you should not be needing to top up with any painkillers if you are on the right dose.
The return of pain and symptoms is the sign you have got to a slightly too low dose - so you go back to the last dose that worked. It doesn't mean you won't get lower, just not yet.
Steroids are often used to manage migraine - so maybe that's the answer.
And it isn't your body who has the last say - it is PMR/GCA. They hold all the aces.
I am so stubborn at not letting these beat me that I try and try.
I get so fed up with it all that I think it is never going to go away. But back to my 7.5 again , that half a mg makes all the difference with me.
I am so happy for the othe people who can go down on there's , but there must be a light at the end of the tunnel sometime in the future for me and others. X
.. and a chicane, hump-back bridges, adverse camber, poor visibility, cross-winds, Road Closed signs, severe congestion - and not forgetting Inappropriate Speed for the prevailing Conditions?
I think the one of the best 'strategies' with PMR is to try to Relaxxx...! and not get wound-up / stressed about the bits of all of this that we CAN'T control or have no reason to blame ourselves for?
Long ago, on a very different but equally tough 'personal' journey, a good friend simply said to me: "Mark, trust that you / things will get better, and Destiny will take care of the rest".
Guess what? She was right, and they did. This is what gives me the confidence to face the future of Life with PMR with an open mind - and hopefully to share it with others here.
It reminds me of the ancient philosophy - especially in times of adversity. It goes something like: "This, too, will pass..".
Thank you Mark, I must admit I do get stressed with not being able to do things like before all this happened. I will smile again after going back up to 7.5 mg then no pains or soreness in my head or muscles , thank you again. X
Have faith, relax - and don't forget to keep smiling..!
MB
Well, that is more than interesting Mark, are you sure you are not dreaming or have you been smoking that wackey backey stuff I have no explanation for that at all I'm still battling to get from 7mmg to 6.5mm using DSNS. Let's hope our lovely 'Aunties' have got some thoughts?
Sounds like to me, the PMR has finally given up on you. You sound elated. That's good to feel good. I hope you continue to feel good, even feeling great!!! I've finally managed to get down to 6 mgpd and feel pretty good. I'm going to be cautiously brave this week and drop .5 mgpd on a go slow method. Getting to 6 mgpd was really difficult so it does sound like adrenals playing a game. Hope you are doing a 'Home Run' Mark! Exciting or what?
Well, I wish (PMR given up..)! But it really does feel marvellous when the pain, stiffness and fatigue ALL lift at once - even for a short while. Fingers crossed, although the nature of PMR does make you a bit cautious even when feeling better / the system is getting back to normal.
Glad you're making progress too - I like your phrase 'cautiously brave' and I'm sure a bit of (the right kind of / positive?) excitement can't be a bad thing for those adrenals. After all, that's part of their Job Description isn't it?!
Better not go into what constitutes 'the right kind of / positive' excitement for me or I'll be back under an ASBO again (only joking..)
The holiday was great, however as a site seeing holiday it was probably a bit ambitious for me, but it’s something TOH wanted to do for her 60Th birthday and as we had already cancelled a holiday to USA and Canada, I thought I had to and could manage this one.
The biggest problem I’m experiencing and have been for some time now is the ‘deathly fatigue’. It just feels like long haul jet lag but worse and at home I go to bed for at least half hour to recover, sometimes twice a day.
The stiffness and pain seems to be under control at moment and only find my right shoulder is painful towards the evening and early morning. I even find operating the mouse on the computer causes my shoulder to ache after a while. Other pains and stiffness are behaving themselves.
So on holiday, walking about was frequently interrupted with me telling TOH its time to sit down for a coffee/tea or ice cream How I did the amount of walking and sight seeing I don’t know, but apart from the dreaded fatigue we had a great time and enjoyed Venice immensely.
I was due to start a reduction the day we went away but as advised by experts on this forum, I stayed on 7mg until the day after we came back.
Returning to your query though and as PMRpro has indicated “PMR sort of cycles”. This was said to me by an Orthopaedic surgeon once. He seemed to know more about PMR than my doctor, but that’s another story.
Anyway, I sincerely hope that your “sudden and miraculous relief”is not a ‘trick cycle’ and that you are on to early recovery the rest of us will be green with envy
Waiting with great anticipation for your “weekly digest”
Glad you enjoyed your hol - even if slowed down a bit by the dreaded PMR / fatigue. Main thing is: you did it after some deliberation (as I remember..) and I'm sure your OH appreciated it greatly. Well done - on, and forwards?!
Thanks for the thumbs-up re. my post. Well, cautiously does-it but it's a good sign. No intention to show-off, just to share experiences and maybe give some Hope to others who are struggling with this horrible illness - as have I many times.
I'm just working on the next load of Nonsense to inflict on 'You Lot'. It spurs me on to know that I can raise a few giggles in between the more serious stuff.
Many thanks Pete (and all here).
NOW, PLEASE ALL LEAVE ME ALONE AND LET ME GET ON WITH THE SERIOUS JOB OF MAKING PEOPLE LAUGH !!!!
The trouble with Venice is it is ALL steps up and steps down. And at this time of year is full of the rest of the world trying to make it sink even further - and in particular large numbers of Chinese and Japanese occupying the top of every bridge trying to take selfies of their entire group so you have to fight your way through to get anywhere.
Last year we were camping over on the other side of the lagoon and nipped over for the day - and swore we will never go back! We did it 40+ years ago with far fewer tourists - and the sights haven't changed. Just the price of EVERYTHING!
It appears that if you want to see Venice you have to put up with it. Put up we did and managed to experience most of the things on our list. Pre booking Saint Mark’s Basilica and The Bell Tower avoided the main queuing Managed to get a good discount on a glass gift on the island of Murano then found out we could have got the same thing back on main land even cheaper without discount .Got bitten by a mosquito on Torcello with which I hope the little blighter got a dose of steroid!
Ah well that’s tourism for you!
Despite the crowds as you mentioned, somehow we managed to have a great time and experienced a water word way of life, from the tourist angle obviously, so it must have been the wine
Talking of mosquitos Pete, whilst on a Scottish holiday a few years ago, a swarm of the little blighters bit me in the Trossachs. I couldn't sit down for two weeks... ;-/
Whilst on holiday in the magical Isle of Skye many years ago, my dear but curious ex-wife approached a handsome Scottish Piper and asked him: "Do you mind if I ask - what's worn under a Scotsman's Kilt?"
He replied with a cheeky wink: "Nothing's 'worn' Lassie - everything's in perfect working order!".
I find after traveling I am terrifically fatigued for several weeks after. Even if I think I am pacing myself I guess I am not. I feel great at the time but not good once home
Not sure about that, I'm fatigued most of the time and have been so on doses less than about 9mg. I think the holiday takes my mind off of it a little but it's still there even on holiday. I have read some ware that a blood test will reveal if you are low in B vitamins B6, B12 etcetera. I had a check and all was ok. So I think it's just one of the things most PMR sufferers experience. You could run it over your doc to be sure.
One of our experts might pic up on this one for you?
If you started to feel fatigue at about 9mg - I'll lay odds that you don't absorb a lot of your pred dose (it varies between 50% and 90%) and your adrenal glands are having a bit of a struggle to keep up.
If the pain is under control, how can I not be absorbing the pred? I would think that I would still be in pain if I was not absorbing enough. The adrenal glands would be completely switched off at that level of pred? I'm out of my depth here
I didn't say you aren't absorbing the pred - I said you are a person who absorbs LESS of the pred.
That is why they titrate the dose - you start with a dose that is likely to be enough for everyone and then you reduce slowly to find the lowest dose that works for you. That means it doesn't matter how much you absorb, you get the right dose for you.
Everyone needs their own specific dose but someone who only absorbs 50% of the amount they take will need almost twice as much to start with as the person who absorbs 90% of the same oral dose.
Not sure how I can explain it any better in writing - hands and feet and bits of paper and diagrams would help...
This really is quite a complex process with so many variables / anomalies - and the potential for mis-understandings about what's going on, and why, in an individual's personal / health context.
I love driving especially, and have a lovely, effortless-to-drive car. But since PMR, even a couple of hours' 'easy' drive takes it out of me nowadays.
I think it's because PMR / the steroids saps your mental energy as much as it does physically - even for seemingly 'simple' activities but which need some serious concentration.
And as for airports / trains / the Underground...! ;-/
Great news, Mark. It sounds as though your adrenals are starting to get the winning hand over PMR. What I think this means is that whereas you thought upping the dose to 7.5mg for a couple of weeks made no difference, it has, in fact, allowed those adrenals the breathing space to get on top of things finally. BUT, please don't be lulled into a false sense of security - that pesky inflammation could still be lurking. I remember thinking how well I was doing at 5mgs, only to encounter the worst flare at 3mgs. I've seen people actually get off steroids only to be back on them a few months later. The answer for me was staying at 5mg for 5-6 months at the suggestion of my wonderful Rheumy , even though I let him know I was less than happy about this at the time! What I'm trying to say (must learn how to précis!), is please don't rock the PMR boat now by rushing this last leg of the PMR journey - better a slow, safe descent to zero Pred whilst at the same time staying well than rushing it and risking a flare with all the pain and frustration that that would entail.
What you say makes massive sense, and in writing my post I'd forgotten about the time lag between changing a dosage level and the catch-up effects of it - either way.
Yep, I'm sure you're right - upping the dose after struggling for a long time before, although seemingly a futile exercise at the time, probably did give my adrenals a rest - albeit with some nasty steroid side effects (which, if I understand correctly, can replicate PMR symptoms in themselves?!).
I agree with you about still not rocking the boat reduction-wise - not just because of the risk of a flare - but more because of the merciless ribbing (or worse) I'll get from my friends here if 'Mr Clever Clogs / Action Man' comes back a few weeks later whimpering and with his tail between his legs. That said, I might (and only might..) try a couple of days at 5mgpd - and watch and wait...
Thanks to you and all for your very diplomatic and helpful responses - I'll keep you posted!
We're all watching you Mark eyes glittering green with envy. Oh to feel normal again! Seriously I hope you have found the magic formula and PMR has packed it's bags and left you. After all it cannot bear relentless cheerfulness and optimism and you have rather a lot of that. Who is going to make us laugh if you disappear into the sunset? 😎
Well, let's see. I'm under no illusion that PMR can quietly seem to lie down quietly and then jump up and kick you again - Ouch! But I do try to keep my positive / funny head on during the tough bits, and fingers crossed they will be fewer and less tough as time goes on for all of us. The pain and stiffness of PMR are pretty nasty (as we all know) - but for me at least, the DFF (Deathly .......... Fatigue) is probably the most wearing and potentially depressing bit of the PMR / steroid equation.
To be honest, it's YOU LOT (!) who've kept me going at times with your banter and encouragement - haven't you all got better things to do..?! Don't worry, no plans to disappear anywhere, even if the Magic PMR Recovery Fairy descends. That is, unless someone less bonkers (than many of you) reads my posts and decides to Section me.
Talking of making you laugh.. I have another cunning plan up my sleeve now I'm feeling brighter again. It's the greatest privilege of all to share some Fun here, and one of the best therapies going.
Now, 'The Lighter Side - MB's Weekly Digest'. That's it, my evening's work about to start...
Keep smiling all, sincere thanks for your lovely thoughts and support as always. Back soon, be careful what you wish for
There is some thought that the activity of the underlying cause of PMR sort of cycles - if it could be measured, plotting it might come out as a sine wave like you get with day/night temperatures on weather forecasts but it isn't stable, the amplitude of the wave will vary. While it is on a down phase you can get away with less pred and vice versa. You also can't be sure that the grumbles you felt were pure PMR - there simply isn't any way of knowing.
I've heard a few people say they suddenly felt different and were subsequently able to reduce more easily. Let's hope it lasts.
Yes PMRpro, I like that one about waves etc. That's exactly how I feel. My enforced seven weeks at 6mg was because I was on radiotherapy during this time, and it seemed stupid to try to taper then; but I believe I definitely had benefits from it.
The trouble with feeling a bit better when the adrenals pick up is the overwhelming wish to do a bit more (we have Open Gardens next weekend), so there is always lots of extra bits to do. I know what I should do but........!!!
One top PR rheumy likes to keep his patients at 5mg for up to 9 months - letting the body catch up and subsequently finds the rest of the taper goes better.
Yes. To be honest I have a feeling that sort of action has a lot to commend it. I am as near as I can be to 4.5mg now, and am considering staying there for a few weeks before trying any more tapering. Think my wife will nag me to do just that!!!
Thanks, as always PMRpro for your helpful comments and advice.
Thank you for this PMRpro - I have quite easily reduced from 6.5 to 5 over about 10 weeks and feel so much better just now. I was going to reduce to 4.5 by very slow method but now will "let my body catch up" by staying on 5mg for at least 6 weeks before reducing again.
Thanks PMRpro, that makes a lot of sense - and if only medical science could measure / track the 'cycling' effect somehow? I think it would be a revolution in the management of PMR and steroid reduction...
That was / is my instinctive feeling too. Time will tell, but I'm going to test the limits of this withdrawal process (within sensible bounds) day by day whilst feeling so much better - and will report back for better or worse.
I am going to try something (see if the technology lets me!) Here is a link to a thing call imgur (a free way of sharing a photo on the web) - this link - imgur.com/a/nnMzA - is a picture of a graph I have which plots pred vs pain. This should work - I tried sending it to myself and I did not have to sign up to weird accounts or anything (which I dislike massively).
On to the chart. I created a 1 to 10 pain scale and rate myself every morning to see how I am tracking. The spiky red line is the 'raw' figure and the dotted red line is a trend averaged out over 15 days - the scale is on the right and I am at a 2 this morning - more on that below.
The blue is the pred dose (scale on the left - I am at 5.5 at the moment) - so you might be able to see those peaks and troughs over the last year both of pain and the reaction with pred. I have been steadily reducing by an average of 0.25 per week - 1 mg every four weeks for sometime now - but am suffering a bit.
I was really interested in a number of the comments. At the moment that 2 on the pain scale I am at would have to be considered as a 'high' 2 - I am feeling like I have done a half marathon without any training or warm up - every morning. After a small doze in the morning (25 minutes) and a longer one in the afternoon (maybe an hour, even two occasionally) I feel a million percent (give or take) better in the late afternoon and evening. Marks comment about splitting the dose has me interested. Should I try 2.5 in the morning to top a 3 mg at night? I would love to wake up not feeling like someone has done me over with a cricket bat during the night. (Maybe someone is and I was sleeping too deeply to notice!)
The other comments about the cycles was also interesting. I have had periods of feeling fine, and even managed a good two week trip to Japan (Sept 2016) and walked each day (on average from the fitbit) about 13,000 steps per day - only a short post breakfast lie down to cope with the fatigue - and all was well. If I tried that now I would be near statue status - un-movable and un-moving....
Back to that graph and the concern for me is the slow rise in the dotted pain trend line. If that does not settle soon I will need to up the pred - 3 on the pain scale sounds low but over the long run that is about what I call the max for standing the pain in the long term. I would like to keep that slow pred reduction but have learnt (mostly with the help of the input from members here) that pmr will do its own thing whatever I want or whatever higher cause is trying for a reduction and a finish to all this.
So, there we go - a comment/update from me after quite a break from making any posts - but I do read this site everyday and love to get confirmations and advice from all sources.
Cheers from down under (and stay strong UK - not that you won't of course!!)
Would agree with Heron NS, you are at a level where your body needs all the help it can get because your adrenal glands need to start kicking back in. If you reduce too quickly, the adrenals don't get a chance to get going again easily.
Might be wise to increase a mg or so, just to get things back on track, although staying where you are at 5.5mg for a few weeks may work.
As for splitting dose, usual recommendation is approx 2/3rds am, 1/3rd bedtime. It works for some, not everybody, but unless you try you won't know.
But you must get your inflammation back under control before you think of doing any further reductions.
As we always witter on - it's not a race to get to zero. You need the amount of Pred you need, and what you need today is what you must take!
Many thanks DL - and 100% agree with your comments. I am actually having a 'flare' this morning (5 on my 1-10 scale) and I can hardly move. So, up to 10 mg for a time and then back to a level that will steady things out. Boy oh boy do I hate this bloody PMR....... I think I will let things settle down for a time before I start experimenting!!
From my side, I quite like - and can well-relate to - your very analytical approach to monitoring 'inputs / outputs' in terms of metrics.
That said (and as I've experienced and the experts suggest here), sometimes Symptoms Rule. And this is the very bit of the equation that's so difficult to measure by any objective standard!
I agree with you. Let things settle down and trust your judgement in the process - as opposed to second-guessing / over-analysing things (which can be stressful in itself).
Yes, the B.....y PMR seems like a curse - but watching the truly awful and tragic stuff in the international news recently, what do we have to complain about..?
Things will, and can get better for many of us here. Food for thought..?
From what we know of you I would guess you're approaching PMR with your 'military' head on! Nothing wrong with that, my late hubby did that with his illnesses and mostly it worked!
But you have to remember that PMR (as the enemy) doesn't follow the rules of engagement that you've been taught and adhere to. Think of it as more like guerilla warfare than tried and tested text book manoeuvres. There's little logic to it, it would appear, so you have to expect the unexpected - just when you think you've got the bugger in your sights it veers off at a tangent!
So you have to outwit it, always thinking three moves ahead - helps if you're a chess player - and employing stealth tactics (slowly and little steps when tapering- a must, then it doesn't realise what you're doing). But most of all never assuming it's playing by the book!
I love it!! So true and thanks for reminding me about something that I should already know and keep pushing to the background in the hope of a better outcome (I think Einstein had something to say about that!)
I think I am going to have to go deep and quiet on the reduction for a time and get the inflammation sorted before I try again (hope I learn the lesson - any want a fiver on that happening this time around....!!??) ha!
Hehe - I think it illustrates one difference between me and my husband (no funnies there please!): we both qualified as physiologists (a long time ago) but I came from the biology/medicine side, he came from the physics side. The mixture is quite interesting...
I like the idea of what you are professing but this subject of PMR is so complicated with so many variables that unfortunately I don’t think it will make a lot of sense. This is mainly because it’s not a true or pure science.
PMR/GCA does what it wants to do and does not comply with a strict pattern of volatility nor work to some scientific pattern. Obviously there are definite conclusions one can make, such as stopping steroid treatment abruptly from a high dose to zero. You can definitely predict a calamitous outcome. The rest, to my mind is far too random.
As an ex engineer from the aerospace industry. We analysed probability to the nth degree, so we could accurately come to some positive conclusions. But as a fellow sufferer of PMR I really find this a strange bewildering illness
So in conclusion and just to say, even though you are on to a tricky analytical subject I really like what you are doing
Yes, I think I may be doing a bit of over analysis and forward predicting a date for the end of PMR is probably a total waste of time. I think I shall go for more monitoring rather than analysing! Sometimes I cannot help myself - I think it may be wishful thinking to assist in getting rid of this damn thing. It is not that it is unmanageable - it is just going on for so long!!
True - I have only been at this for a year now - I guess still working alongside all my colleagues and seeing them operating at 100% is a thing I do not enjoy - I have to adapt to that, but I am resistant (code for pig-headed maybe!)
Yes it is a waste of time- and energy, which as you know is in limited supply with PMR anyway. This damn thing will go in its own time - sooner you acknowledge that the better for you!
Not sure it's a total waste of time Piers, maybe better to set a provisional target (good to have something to aim for?) but be ready move the target if necessary. Hopefully it will all come good eventually.
Thanks Mark and good comment. I sort of need a target - something to aim for and I do have a time pressure to deal with - a military fitness test that I want to complete before the end of the year - that will keep me in the Defence Force, something I want to do. Luckily at my age the numbers to achieve are very very easy (recognise a push up from 20 paces....etc). The idea of a target is interesting though, and will certainly need to be flexible - I think my PMR is 'changing' - I have been keeping a good diary on all the symptoms, as well as practising a bit of good old hippy meditation. The 'pain' pack I have done (and am repeating) gets me to examine and look at the pain in an analytical way - and it is changing.... Not so much 'for the better' - but different - a little like the style of pain I had in the early days of PMR - so it is good to be able to read back over the history and look for patterns (where that graph also helps). I am wondering if I am approaching a break point? (maybe similar to yours) - is this the slack old adrenal gland waking up to itself and starting to work again? Time will tell, one way or t'other...
Thanks for the comments and all your input - I enjoy it all and knowing I am not along is a comfort. I already know that once I am out of this (touch wood) I will stay as part of this forum....
With my Analytical Head on, I think there's also a lot of merit in the idea of looking at and understanding big / long term patterns / trends (meta data?) as well as examining small / short term ones in our context.
I found / find the 'Big / long term Picture' approach useful when trying to make sense of the process / my progress in it overall. And, of course, PMR is a long term illness, so it makes things clearer for me subjectively.
I haven't had time to look at your graph yet, but agree with what (I think..) you're saying, i.e. close analysis of the metrics can be combined with an intuitive / 'feelings-led' approach to give two perspectives on Cause and Effect? And, as many here say, Stress (although very tricky to measure accurately by any yardstick) can play a big role in feeding back into the Symptoms equation too. Food for thought...
I'm chuckling (respectfully!) at your good old Hippy Meditation idea - reminds me that if something works, we don't always need to spoil things by trying to understand why!
Going back to 'Feelings', I think some of us are naturally more self-aware / intuitive than others, but I can relate to what you say about feeling 'different' and that's probably a good sign.
You might have spotted my recent Post on my sudden and dramatic relief from nearly all of the PMR symptoms - despite having dropped the Pred dosage significantly (33%) in one potentially risky 'hit' after feeling more rotten than ever having previously increased it. My intuition was telling me that the Preds were the culprit and, after 10 days at a sudden, significantly reduced level (against the usual best advice). Another reminder, perhaps, that there are so many paradoxes / contradictions with this illness - and some of them are totally beyond our control!
Glad you're not giving-up on the things you like doing physically (fitness test etc). I'm convinced that keeping fit (within reason) helps in the recovery process too, and contributes to 'tickling' those sleepy adrenal glands into action along the way.
Let's hope you are in fact reaching a break point - it'll be good to compare notes! I agree, the forum is a goldmine of advice and support (and a bit of fun!). In a strange way, even if (and a big IF..) I was out of the woods / in remission, like you, I would still want to be part of, and involved in this terrifically helpful community.
Yep Pete - for those of us who are more analytically minded, the hardest bit with PMR (and the treatment of it) is in dealing with all of the ambiguity and uncertainty in the process.
You've hit the nail on the head with that statement Mark
At the moment I'm playing about trying to get to 6.5mg from 7mg using DSNS method and am finding I am getting mild symptoms like when it all started. Plus one other symptom which I am getting, pain or ache between shoulder blades. That one is a new one Do not know if I'm on my way to a flair or whether it's withdrawal symptoms or have I reached my limit of reduction for the moment OR WHAT! So confusing
I have looked back at the 'the Aunties' notes to get some guidance, but still confused. Its not a full blown flair I know that but I feel so uncomfortable in my body and my mind about it.
DL said, I think, that it took a long time for her adrenals to get going again, but she didn't explain what were the symptoms during that period. I.e. pains or what?
Can I ask what were you experiencing just before you had this miraculous improvement? You mentioned that you were juggling with dosage?
Thanks Pete - and to anyone here to whom this is relevant..
Ok, I looked back at my records over the last 8 months and this is my approximate symptoms / dosage pattern (although it seems a very contradictory one..!). Sorry this is quite long and detailed, but it might help you / others with the same dilemma. I stress it's NOT a recommendation - only my personal (and possibly atypical) experience.
Here goes:
Oct 2016 to March 2017 (last 6 months of 2 year journey):
Using my equivalent of DSNS, nudging DOWN very slowly from 7 to 6 mgpd Pred. Pain / stiffness symptoms during this period (on a subjective ' Richter' scale of 1-10): typically 3-5 (i.e. relatively tolerable compared with 9-10 at the outset 2 years ago (intolerable / crippling). Regular pockets of 'Deathly' mental / physical Fatigue ('DF') lasting a few days, but not necessarily attributable to levels of physical activity or incremental pred reductions. In fact, sometimes DF occurred despite staying on a level dosage and being relatively inactive. Hummppph! :-(. One or two very brief (1- 2 days) periods of respite from the symptoms: otherwise, the New Normal. Conclusion? (with the help of the experts here): probably hovering around (+/-) the lowest dosage that effectively manages the symptoms.
March to May 2017 (approx. 6 weeks):
'Stuck' at 6 mgpd, pain and stiffness unchanged (typically 3-5), DF increasing in frequency if anything. Fed up, considering asking GP for adrenal function / any other relevant tests in case 'This is It', i.e. I will be on the Pred / experiencing these symptoms indefinitely. At the same time, all blood tests 'normal' (as usual). More Hummphh..
Late May 2017 (approx. 2 weeks):
Following best advice from the forum: 'UP' the Pred to 7.5 mgpd for a week-ish - but no difference in pain / stiffness levels. In fact, more DF and new, constant feelings of slight nausea, 'wooziness', all-over malaise mentally and physically. Now, very fed up and feelings of going backwards in this confusing process despite my best efforts :-(.
Early June 2017: (1 week):
Intuition telling (or rather shouting at..) me that the Pred MIGHT possibly be the culprit (esp. the DF, nausea, wooziness etc) as feeling significantly WORSE by upping the dosage. So, I take a cautious Leap of Faith. Although a massive (and not recommended) 33% drop - and in one 'hit' - I try 5 mgpd for a day or two to test my theory - but brace self for the fallout (relapse) if things get worse still as a result. I am mindful of what my good friends here tell me...
Result? (5mgpd and continuing): miraculous, almost instant relief from almost ALL symptoms. Pain / stiffness suddenly 1-2 on Richter scale at worst, at times virtually non-existent (Yay!!) :-). Sleeping better than for ages, waking up with curious absence of pain / stiffness, 'springing' out of the car / up stairs rather than dragging myself around (a nicely strange feeling), and feeling physically stronger, more supple and energised than I can remember. And as for the dreaded DF- what DF??!! Clear head, no Brain Fog. A quite astonishing and sudden, all-over, 'inside and out' feeling of 'wellness' / normality after 2-ish years of 'Fighting the Dragon' (q) Kate Gilbert. Triple 'Yay'!!! :-))
Last 7-10 days (5mgpd):
Probably the busiest week mentally and physically for a long time: much travelling / driving / logistics / admin (buying and selling family cars), a DIY project (decorating, lifting, stretching, bending, up ladders etc), with little or no fallout other than feeling 'nicely' / naturally tired - as I normally would pre-PMR.
My N&D notice that I'm now, suddenly 'standing up straight' again and not shuffling around like a zombie / looking very weary for the first couple of hours in the mornings. They say I look different, more relaxed, 'better' all round.
Make of this what you will, and the above account isn't intended to steal the limelight and / or make other long-term PMR sufferers (I know there are many here..) feel inadequate about their illness, the cause of it, their treatment regimen, attitude, or progress.
But, perhaps, it's just a reminder to all of us that this 'confusing' (q. Pete) illness can have very contradictory Twists and Turns symptoms-wise either way (+/-) despite our best efforts to manage it - and can / does, sometimes at least, abate (go into remission?) of its own accord. This seems to be my recent experience - Phew.....
10 days on from my truly miraculous 'turn around' after defying the Best Advice on Pred tapering (sorry, trusted experts!), all I can say is how great it feels to be something like Normal once again. So far, so good, and continuing day by day.
That said, I realise that there are no guarantees with PMR - even when feeling better / if it's 'on the way out' etc - and it has taught me to enjoy every day as it comes - especially for now. Fingers crossed..
Keep smiling all, and try to keep positive in the meantime.
p.s. Pete - re. the PMR pain / inflammation, in my experience it can / does move around the body a bit. I remember it getting stuck into my thighs / buttocks for a while at one stage.
Yep, it's so difficult to understand what's going on re. a Flare and / or Pred withdrawal symptoms - as my long post (below) might suggest.
I'm sure the 'Aunties' will explain better than I can..!
Thanks for that comprehensive answer I could not ask for more. Just so pleased for you. It just goes against any advice to do what you did and to end up with a good result. It's almost like the pred was overriding your adrenals and when you went to the lower dose the adrenals were able to kick in. I think you must have youth on your side. I'm looking very green at the moment but I am really pleased for you
Well, so far it certainly looks / feels like a Result - and I guess typical of Mr MB Clever Clogs 'taking a flyer' at a different approach when things aren't going to a standard plan. I'm sure your 'pred / adrenals' rationale is pretty accurate. All I can say is 'Phew..' for now at least.
Either way, I'm not going anywhere in a hurry, or making any assumptions - just enjoying feeling SO much better, and wishing I could bottle it and send it to all here.
He asked a question where he said he couldn't find an answer from us - so I gave him one. Identifying I was perhaps one of the "Aunties" he mentioned...
I would have done the same for you - as I do for everyone
PiersC, at first glance I'd say it's fairly obvious you should not be tapering so quickly. I'm not going to suggest what you should do, but if it were me I'd probably increase slightly and stay there for a few weeks. At this level your body needs time to adapt to the lower dosage and a total of 1 mg per month is likely too much now.
I think you are right - my doc has said that in the case of a flare go up by 5mg straight away and then reduce back to a level was comfortable before the flare. For this one I am having now I have gone to 10 (from 5.5) and I will stay on that for a few days until feeling better and then head back to about 6.5 I think. If you have seen my other comments and some of the excellent and sensible replies I will only have that as a plan - the actual outcome will have to depend on the PMR (as it seems to be the winning hand.....)
Yep Piers. Even with the best science that we can apply to the tapering / monitoring / forecasting process, it seems that PMR ultimately has a mind of its own - regardless!
Hi there - wow this sounds excellent progress! Long may it continue!
I too felt the most awful in his lifecycle of pred reduction when I hit the 7mg dose. The pains were still in abeyance but oh my days the fatigue was just about killing me. I stuck with it and now I'm down to 4mg - and I actually feel only a few blocks down from FABULOUS! And feeling really positive that I'm actually beating this accursed illness! Be gone damn you!! I'm ever the optimist and an appointment with my rheumy looms in the next few weeks. Time will tell!!
I wish you luck love and laughter as you kick the rather rotund pred butt of PMR!
Keep smiling - it makes others wonder what you've been up to!! xx
Interesting that you had the same experience with the dreaded fatigue at about this level - but maybe at a turning point all the same?
Thank you for your lovely thoughts. As for what I've been up to (to get this result..)..? Just trying to carry on with Business as Usual - and of course to keep smiling through the Tough bits
That really is great news Mark - keep it up. Like you I feel so much better. I'm on 5mg Pred. Felt better at 6 and 5.5 but now on 5, I have lots more energy, no pmr pain at all and the woozy feeling gone completely. I cannot really believe it! I kept counting the good days and now I'm counting the good weeks. I'm due for blood tests soon (when the nurse gets better) so we will see what those say for themselves. But I'm thinking postitive (pretend smiley face here as I cannot do this on my computer).
Many thanks Marlenec, PMR really is a Helter-Skelter of a journey isn't it?!
As you say, the 'Ups' feel marvellous after so many 'Downs' - and things can get better if you hang-on in there. Clearly, the 5-7 -ish mgpd dosage / reduction range is a critically important bit in the process... as many of us know.
Thanks again, good luck to you too - I'm sure a PMA helps in all of this!
That's very kind of you, many thanks :-). Yes, still feeling remarkably better mentally / physically than for a long time despite a 'full-on' week. I almost feel my old 'Action Man' self again. Phew....
AND.. all of this having very adventurously dropped to and stayed on 5 mgpd preds after a few weeks at 7.5 (a 30% 'sudden' drop compared with the recommended, graduated / DSNS-style maximum taper of 10% - which, I totally endorse), and after 6 months or-so of tortuous 'hovering' and trying to nudge down from 7 mgpd - mainly unsuccessfully.
As mentioned in my next-to-last post, I've no idea if this is due to the PMR inflammatory process (and the classic accompanying symptoms of significant pain, stiffness and mental / physical fatigue) 'burning itself out' / going into remission, and / or the adrenals getting their act together again? I'll place a 50/50 bet each way...
Either way, the difference / relief from any or all of the above symptoms is DRAMATIC - and I don't use the term lightly. Subjectively, I would say a 90% improvement, almost overnight, and continuing after a week despite significantly more mental / physical 'load'. Result!!! (for now at least..).
As I write this, I'm acutely aware of the risk of having a false sense of being out of the woods - and the possibility of a PMR Flare / the 'Dragon' biting again (as per the very sound advice from my 'Aunties' here!).
But for now, at least, I'm enjoying a renewed feeling of energy and relative normality - it really is a 'Night and Day' difference. I just wish I could put the Secret in a bottle and send it to all of you...! But at a price, of course...
Hope you're getting through it too, keep in touch Jan / all
Mark: I was trying to research if "remission" is sudden and came upon your post. I have been battling GCA and PMR for 5 years. I keep a journal. I noticed that on May 26, I wrote "no pain." Possibly this was the first time in 5 years. It continued. I had been having problems and actually reduced the weenie amount on the DAANS system of .25 mg. from 7.25 mg. down to 7.00 mg. Whoopee! Before that it was 7.5 to 7.25 after having a had very hard time trying to reduce more. I just can't believe how I feel. I feel well. "Well" is the word. It's crazy. I will now reduce at least .5 mg. I'm a little too structured and even thought about getting a scale which measures to .0001 of a gram in the hopes of trying a .7 mg (10%) drop. But they cost about $1,400 US. (Hey it's less than Tocilizamub [or whatever that drug is]) I have read that now the average time for GCA going into remission is 5 years. And I'm "there." (I have mostly GCA, but sometimes have PMR, but not terribly). Even all the eye doctors seem to be dismissing me. "I'll see you in 9 months." I also have had a very physically difficult (for me at least) 10 days. So maybe I'm right there with you. Maybe remission happens in a snap. But my taper remains very conservative. Been kicked in the teeth too often. We'll see. Thank you for your post. It was exactly what I was looking for.
Thanks for your lovely reply, all part of the service here
Well, what can I say, except CONGRATS too!!!
Well, as for feeling 'Well' / (Normal?): I'm not an expert but it seems to be a positive sign that your PMR / GCA has gone into remission (or at least settled down) and / or your Adrenal function is restoring itself naturally. Hopefully both at once..? Fingers Crossed for you...
I think you're right in continuing to be cautious with the steroid tapering - even if you're feeling fine now (as I will too). All of the experts here (PMRpro mainly - she is an authority on the topic - trust her advice) will tell you that, even when feeling better and / or the symptoms have abated, you MUST still take it easy until the delicate adrenal system gets back into some balance. And this can take 12 months at best..
As for Remission being 'sudden'? Well, I just don't know! But, for me at least, it seems that way and I'm making the most of it!
To quote an old saying: 'Miracles can happen' and they do sometimes!
The basic idea of the DSNS taper is to save the agonies of cutting and worrying about 10% dose changes - you can manage bigger steps if you dip your toe in the water several times before jumping in up to your neck.
I stopped the pred for the same reasons you mentioned 3 months ago. Currently my pain is a 4 and improves with Advil. Some days are great some are ok. I dont regret stopping it but may have to restart if I have a painful flare up as I had last summer. My fingers are crossed. GOOD LUCK
I wouldn't go against the very trusted advice and support from the experts here, but maybe for some of us (in certain contexts?) it IS possible to be more adventurous with pred reductions?
As you (and the experts here) say, we can always re-start / 'up' / reduce the preds either if experiencing a Flare or feeling better - at any time, by any increment, and for whatever reason.
Maybe this common but controversial drug isn't the 'enemy' after all - just a question of learning how to use it in context?
I am an RN I always do things a little out of the box. Right now I am ok . I have seen how my many patients adapt their medications to their own experiences. I always listened to them and rightly so. They have learned how to listen to their bodies as I have . Fingers crossed as always.
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How to handle a flare?
