Diagnosed in March with PMR I am on a taper down from 15mg and have just reached 6mg. All has gone pretty well until 7mg when I was waking at the ‘witching hour’ around 4am with slight aching hips and chest. Enough to wake me but I was able to go back to sleep after changing position. Discomfort disappeared after getting up and taking Pred at 8.30 and I put it down to some fairly good uphill walks nearby
The transitions as far as 8mg were done after 6-8 weeks but I was confident enough to shorten to an interval of 4 weeks, with the first week of the change alternating daily between the previous dose and the new one.
Now I find my upper arms, chest and my glutes are slightly stiff and uncomfortable during the day. Not as bad as when first diagnosed but noticeable nevertheless. I’m trying to attribute this to some strenuous - but not manic - cycling over the past week. But I’m possibly kidding myself and I’m wondering if these are the symptoms of a mini-flare. Not knowing how to recognise a flare I’m not sure. Is a flare a return to pre-Pred conditions or is it any manifestation of symptoms?
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51Highland
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The transitions as far as 8mg were done after 6-8 weeks but I was confident enough to shorten to an interval of 4 weeks, with the first week of the change alternating daily between the previous dose and the new one.
That may be where you problems started - rather than speed up reductions you should have stayed with previous regime, and if anything slowed it even more by trying 0.5mg rather than 1mg per taper.
I think you may well be kidding yourself, hoping it’s down to cycling - it sounds suspiciously PMR-like to me.
A flare is just a return of symptoms, sometimes just a few, sometimes all of them ...can be due to too much activity for dose of Pred (ie. your cycling) or just too little Pred, full stop.
Plus of course, you are in the “adrenals need to reawaken” timescale....so you probably need to take extra for a week or so.
You might find 7.5 or 8mg will be enough, but if no significant difference after after a week, then more 10mg? may be needed. Catch it quickly and you should be able to come back down to 7mg, but then stick there for at least a month before embarking again.
You’ve done very well to get so long so quickly (some might say too quickly) so time to steady up methinks.
Depends how long you leave it! If you are only just about enough pred you will start to get niggles like this until the pred kicks in. If you then sit there in denial and continue to reduce the daily dose you are likely to find it gets worse - until eventually the left-over inflammation builds up to the level it was before pred. Just like a dripping tap will eventually fill a bucket if you aren't taking out as much or more water than the tap is adding.
At this stage you should be SLOWING the reduction, not speeding it up. The lower you get the closer you are going to be to the destination dose: the lowest dose that provides the same level of symptom relief as the starting dose. You are not reducing relentlessly to zero unless you are very very lucky and it rarely happens that simply I'm afraid.
It might be attributable to the cycling - there comes a point where you have to balance the dose and what you want to do.
Thank you PMRpro. I thought I had noticed from the taper programme from the Royal College of Physicians that the initial taper period seems to be longest, getting shorter as the dose decreased. But your reply makes sense and I am obviously being impatient. Very helpful as always.
Just because the guidelines say it - don’t necessarily mean it’s true. It took me almost as long to get from 10mg to zero than it did to get from 80mg to 10mg!
Thank you. Now I get the picture. I have not heard from my GP since the diagnosis made by an online consultant Rheumatologist in March last year. Mind you, I expect they have other things to think about. This forum gives me more cause for optimism than both my GP and the first (NHS) Rheumy. Both denied for about 8 months that I might have it and being used to obey orders, I accepted their diagnosis. That was until the (expensive) Rheumy simply put me onto 15mg Pred to confirm or deny. Et Voila! As they say.
Hello Dorset Lady and Happy New Year to you and yours. Your wisdom has helped me and kept me on track since this condition took over. I have been decreasing my pred dose on the slow method and am just starting to go from 2 .50 to 2, recently I have noticed my knees and shoulders are feeling just a little 'hot', . I am wondering if this is a flare or withdrawals,I read somewhere on this forum that PMR symptoms do not respond to pain killers, and wonder if you could advise ?, I did take a Difene tablet and it took away all aches, don't want to leave this unattended if it is a flare. Thank you for your advice in the past you are a lifeline to so many.
If the Difene helped then it may not be PMR, but as it’s a NSAID it’s not recommended to take alongside Pred......
Also it does muddy the waters ...because if it helped then that could indicate that the “hot” joints are due to inflammation - and that description is very apt for a variety of things including arthritis, bursitis etc.....not sure PMR pain is usually described as such.
But if it’s all joints then that does sound very PMR-flare like unfortunately. Looking at profile I see you only started Sept 2019 so you have probably gone below your lowest dose to control things - for the moment anyway.
Initially suggest you stop tapering - and return to 2.5, and see if that helps......you may catch the flare quickly enough. If it does, then stay at 2.5mg for at least a month before you consider any more reductions.
If that doesn’t work after about 5 days or so, then maybe 5 -10 days at 5mg to really get a grip, and then drop back down to 3mg.
You’ve done very well to get where you are, but I think your illness is saying - too low.
When you say "hot" do you really mean they are warm to touch? If that is so, then neither that nor your response to diclofenac are really typical of PMR. It suggests there might be a something else going on. .
So good to hear that. I have had to go back up to 10 from 7.5 and am starting to realize that this final stage is going to be very slow. I am willing to have patience as its been a long road from 60 to 10. One thing I have learned is patience and it is not a race to get to 0. Always like your advice.
Did you go down from 10 to 7.5mg in the first place?
Do hope not.....from 10mg only 1mg every 4-8 weeks -depending on patient and disease activity.....from 6mg Idid 0,5mg per taper (normally over 5 weeks).....occasionally stopping if I knew I was going to do anything slightly stressful - holidays, flights to NZ etc. Albeit very nice, but still stressful in that out of the normal!
Patience is not one of my virtues...but according to son, stoicism is!
I went form 10 to 7.5 on alternative days for a month and then down to 7.5 for 3 months but only lasted 6 weeks. Dr has put me back up to 10 for a month and then a phone consultation. I am going to insist on going down only 1. Thanks for your reply. I always read your posts and get good information. Thanks for replying.
I'm fairly sure the Quick paper gives a month for every step except the first 2 where it is 6 weeks. But as DL say - most of those tapers are based on theory. Our version is based on empirical evidence gained the hard way!
I had a pretty uneventful taper during my first years. One year to get to 3 mg. A second year to get to 1.5. (Unfortunately 1.5 wasn't quite enough and three years later I've been hovering about 2 mg.) Note that my taper the second year was much, much slower than the first year, and in the first year the earliest tapers were the fastest, I really slowed down at about 7 or 8 mg, reducing by only .5 mg from then on.
I've learned patience, that came with acceptance of the disease, it is what it is. I did taper to zero at one point, last year actually, although it turns out I need to take a small dose of pred and am no longer at zero. However it took an entire year to taper from 2 to zero, three months at each .5 mg drop using Dead Slow Nearly Stop method slowed down truly to nearly stop. In retrospect I should perhaps have stayed at 1 mg, but you don't know until you try. And life circumstances change things. The length of the pandemic, for example, is now having a very deleterious effect on me, and like so many things simply something we cannot control. We can, however, control some things. We can eat right, pace ourselves (rest, let some things go - dust will wait) try to avoid stress, etc. But we have to learn these things. It seems like everyone with PMR was once upon a time an active person who hates to be idle!
Ah I think you have a point there, I hear so many Say they were really active before this, I certainly was ,still am when the joints allow. Be interesting to do a survey, it might be useful somewhere along the line, I must admit that I have often thought to myself when seeing younger ones exercising to extremes 'wonder if they will have to pay for it at a later date ?.
This has come up before. I had an exchange with a member who was sure that there was a link to a very active lifestyle. One of the professionals said yesterday that it was important to find the right dose to balance the activity (in my case cycling)
I’m having the same sort of reaction to reduction ; initially on 15mg from Nov 19 and have now managed to reduce to around 6mg by splitting tablets and doing half mg at a time. I am getting some shoulder aches and general upper body ‘tightness’ as well as feeling very tired some days.I find that exercise helps to reduce aches but not the fatigue. I’m 74 so don’t expect to be totally energised all the time but would like to feel a bit more spring in my step than I do some days. As I have an autoimmune blood disorder too the haematology people want me to reduce the steroids as much as possible so I feel a bit stuck between the two conditions. Sounds as though the advice would be to go back up with the steroid dose from what I read here?
Thank you Jackie_boy. Sounds very similar in many ways, especially the exercise relieving symptoms. But I take on board the advice from here that we must not ‘live with’ the discomfort/tightness etc or we risk a buildup of inflammation that will take us back to how we were a year ago. I have have now hopped from 6 back up to 8mg daily for a week and will then reduce by .5mg as you are. But having departed from the template tapering plan I’m now a little unsure how long to stay at each dose before trying a reduction; I think 4 weeks sounds about right.
I only disagree with you about accepting age as a reason for not having a spring in your step. Your lovely looking Border terrier won’t thank you for that!
It’s always comforting to hear that others have more o r less the same reactions to the various aspects of this problem so grateful for t he posts/responses. No I don’t really believe that being my age reduces the potential for being active, I think others do though! My dog doesn’t either ( he’s a Patterdale Red Fell by the way).
I don’t think the photo is that clear and the rescue people said they aren’t that common - so maybe difficult to recognise! He’s certainly keeping me walking.
You are probably also experiencing the fatigue of waiting for adrenal function to return to normal too. That will happen slowly and only a slightly lower pred dose will tickle them into life. I certainly wouldn't be keen to reduce any further for the moment - if you can cope as you are it would be better to wait and see if the aches remain constant or whether they get worse. If they get worse you probably need a little bit more - 1/2mg can make a big difference - but the aches could also be due the adrenal component.
Thank you for the reassurance. I had read about the reawakening of adrenal function but hadn’t managed to track down any detailed description of what it’s like, although no doubt it is somewhere on the site.
Actually if they awaken normally you shouldn’t notice anything much - they start to produce enough “normal”* cortisol to complement the level of Pred.
* The normal cortisol production by your Adrenals (does vary between 5-10mg) known as the physiological level) - but when you are on long term Pred and above that dose they temporary stop working.
That means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena!
When we get low levels (around 7.5mg) we need to reduce very slowly to nudge the adrenals into working again.
For the majority of people they do start working again - although it’s not like switching a light on - one day they’re asleep next day they’re awake! It takes a little while to recover all function. ...in fact that recovery may go on after you’ve hit zero.
If they aren’t working correctly you will feel fatigued, maybe nauseous, lightheadedness, listless.
There is a test (Synacthen test) to check if they are capable of working - not if they actually, just if they are capable of functioning. GPs won’t usually refer you for test until you reach 5mg maybe 3mg and if you are having problems described above.
That’s very useful, you’ve described the current symptoms exactly so I will slow down on the taper and keep an eye on it, maybe check with the GP at some later point if necessary. I’m not very confident in my GP surgery on the PMR as they haven’t really gone into it with me in any detail, just said it was bad luck to get two autoimmune conditions. They are much more interested in the blood disorder and along with the haematology consultant focus on encouraging me to reduce steroids - the blood problem started about 9yrs ago so I guess I’ve had a lot of steroid intake.
Actually it’s not so much bad luck to have two A/I illnesses, it quite a common occurrence - something your surgery is obviously not aware of.....Good luck with your reducing.,
I was down to 10mg Prednisone, but after experiencing blurry vision in one eye, have now been diagnosed wit Macular Degeneration. Ophthalmologist wants me off Prednisone completely, so I am transitioning to Hydroxychloroquine slowly. It has only been two weeks, Prednisone is down to 3mgs but I’m not sure the HCL is kicking in yet. Lots of morning issues with PMR stiffness in shoulders and hands.
HCL is unlikely to "kick in" - it isn't used for PMR because steroids work, it has not been shown to do so. If it worked - they would use it since they are so scared of steroids.
When my symptoms started I would wake up in the night with hip pain, needing to change position. This never happened just because I had a hilly walk the day before. To me, this would have been a warning sign to slow down or stop the taper and I would have stayed at 7mg waiting for the symptoms to disappear completely. Otherwise, it's hard to tell when one should have stopped. DL explained what may be the best course of action. It is often suggested here that one could take a higher dose, say 10mg for 5 days (as often suggested) than drop back to 7.5mg (in your case as 8mg was fine, but 7mg was not) and see whether the symptoms go away. I have never been in this situation myself and cannot vouch as to how successful it is, but others with this type of experience may come along and share.
Taking it easy with strenuous exercise for a couple of weeks may help separate different types of pain, give you more clarity and provide your adrenals with a bit of a break. I hope it works out for you.
Oh my goodness, this is so similar to me 51Highland! I was diagnosed in June last year, started on 30mg and tapered to 5 mg in September, and felt pain. It was very fast to taper down and the pain was not as bad as the original but I spoke to the Doctor and went back to 7 mg. I am now trying 6 mg one day and 7mg the next and so far I am fine. I have always been so active, riding horses and playing golf but can't do that anyway at present so still trying to keep up my exercise with walking which I feel helps. I hope you can get this sorted as it is so frustrating when you think it's going well.
Wow! And double wow! I can sense Dorsetlady, PMRPro and others recoiling in horror. Sounds way too quick - even in my book. I think that, like me, you see Pred as a necessary evil but the faster we can taper down the better. Now that I understand it better (from this forum) I am (reluctantly) mending my ways. The danger when you have PMR pain is that not dealing with it by returning to a dose where you were comfortable and starting to taper more cautiously, risks a buildup of inflammation that will take you back to square 1 - or worse!
Although I want to get off Pred ASAP my lifestyle is more important to me and so I will concede and go more sensibly. I wish you luck. There are others far more experienced than I who will comment more usefully, I’m sure.
If you've found a sweet spot, well done! Don't taper again until you are really sure you are ready, and I hope you can taper by .5 mg from now on. You may find the alternating protocol gets a bit more difficult as the dose is lower and each dose is a bigger percentage change, but there are slow taper methods on here (pinned post) which can help with that.
You seem to be reducing very fast. It has taken me 25 months to get down to 2mg. At the level of 10mg. I went extremely slowly, by one half mg. My understanding of the illness is that the adrenals produce about 8-9 mg., which has been stopped by the prednisone, so these glands have to awaken, and they do so very slowly. I am trying to figure out how my pill cutter can cut such a small 1mg. pill in two. I'll probably wait until conditions are a little less stressful before trying to reduce more. Best of Luck
Thanks Noosat. I just followed the template put out by Royal College of Physicians. From an initial dose of 15mg it was about 6-8 weeks for the first 2 reductions then 4 weeks thereafter. It all went well until I went down to 7, which produced the odd early morning discomfort then 6 which got worse. Thanks to advice from this forum I have nipped back up to 8 to stabilise before trying the .5 reductions every 4 weeks.
Sorry to hear this tale of woe but thank you for your very clear response. I feel much better informed - and confident - as a result of all the responses to my post.
Hi 51HighlandI'm not far from you in Dorset..near Sherborne. I started PMR in around 2009/ 2010 with shoulder, neck, hip girdle extreme stiffness etc, was diagnosed pretty quickly as probable PMR and started on 20mg. Within hours, all my aches and pains had completely disappeared!! Thereby confirming diagnosis I think? Well I reduced really quite quickly down to 10mg, slightly slower to 5mg then the dead slow stop method.... probably took me around 2 to 3 years to stop completely. Not sure if I was right but had regular blood tests and if my ESR had gone up, I would stop reducing until it went down again. So I had no symptoms at all throughout the reduction... I wonder if it might have been better to rely on symptoms rather than ESR? Anyway, I stopped pred around 4/5 years ago....so 6 to 8 years altogether but the last 2mg I did even more slowly!!( have it written down somewhere).
I'm currently wondering if it's back and, as blood tests have been up and down, have made a private appointment to see a Rheumatologist in Bath that I was recommended to on here. As I sit here, I'm actually feeling a lot better!! So it might not be. I've been using Flexiseq, a gel without drugs, and that might be why it's feeling quite a bit better ( if so, it's not PMR!).
If you are still struggling, I'll give you the name of the Rheumy in Bath that someone on here kindly recommended. I think it was DorsetLady.
Hi Beevbops. Thank you so much for your reply. I think (!) I’m under control now. I whizzed back to 8 and have steadily reduced by .5mg every 4 weeks. Now at 7 and feeling good and able to lead my normal lifestyle. I found all this self-discipline really hard to take mentally but I am quite happy to elongate the tapering if it means ‘living the dream’. I’m lucky. I hope it lasts. I’m delighted you are feeling better. Your journey started same as mine. I do hope your Bath Rheumy works out. Frankly I have found this forum more useful than any medic. Best of luck (Sherborne’s a lovely place)
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