Newbie here with my very first post and a couple of questions/dilemmas...
I was diagnosed with PMR in December 2021 and after a trial week of prednisolone at 5mg which didn't work the doc put me on a 15mg dose to follow a plan of initial reduction to 12.5mg after four weeks, 10 mg after another four weeks, and reducing by 1mg every four weeks after that.
By April 2022 my pain had all but vanished and I even got so far as to get back on my mountain bike and into the gym again, and apart from some pain in my left wrist at the 7mg stage which I put down to too much over enthusiastic weight training too soon, everything seemed to be progressing well enough until I got to the 5mg dose and started to feel (together with the wrist pain) slight twinges again in my shoulders and hips. The wrist pain never went away and eventually forced me to stop with the weights again while I was still on 7mg, and has become progressively worse and spread to my other wrist and the fingers of both hands to the extent that I now have almost no strength left in either of my hands. When I mentioned this to the doc she didn't react but after reading a number of posts on here I am becoming ever more convinced that the initial wrist pain was a sign of steroid withdrawal and a warning that I was tapering too fast but in my ignorance I self diagnosed it as a simple sports injury. My shoulder and hip pain and stiffness have also steadily increased over the last few weeks until I am now almost at the stage I was at right at the very beginning and I can no longer go out on the bike or do anything physical which might be remotely regarded as exercise. Sleep is once again becoming very difficult and I am quite sure that I have tapered my steroid dose far too fast and rushed past the end point of the titration for the correct dose for efficient pain management - all on medical advice incidentally, although to be fair to the doc she did once advise me to stay on a higher dosage for a couple of extra weeks when I had some twinges at 9mg.
Therefore I have today increased my dosage back up to 6mg in the hope that this will be enough to get me back on track for a much slower and planned tapering. Having looked at some of the plans here, and one in particular which is extremely slow, this would seem to be a much more sensible approach that what I am getting as standard guidelines from the doc.
My questions/dilemmas are as follows :
Will 6mg be enough or should I try a slightly higher dosage? I have a small surplus supply of prednisolone left over from when I was on higher dosages and can stay on 6mg for a month if needs be.
How long to stay on the slightly higher dosage before starting to taper again and to avoid any withdrawal symptoms.
Dilemma - are the symptoms I am now experiencing and which seem to have a few extra goodies thrown into the mix - pain in wrists /hands etc symptoms opf steroid withdrawal or a flare up of PMR
Yes you are right, too fast a reduction -and most definitely too low at the moment -and doubt 6mg will sort it out.
Have a look at this post which contains advice on dealing with a flare - suggest you increase to 10mg and follow advice therein - you may be able to get back to 6mg -but then stay there for at least a month to make sure -
Future reductions -0.5mg a time and preferably a slower taper- you need to get -and keep - things under control. You don’t want to get into another flare -each one becomes more difficult to deal with.
yes I'm a guitar man, for over 50 years in fact but I currently struggle with lethargy in that field and hardly ever pick a guitar up these days - a possible prednisolone side effect perhaps..?
Thanks for the links, I'll have a look at them. Very disappointing that you think going back up to 6mg wont do the trick so I'll have to try to speak to the doc again on Monday as planned if I can fight my way past the phone answering dragon, and ask her to increase my dosage and I expect I might meet some resistance there as she is keen to get me off the steroids...
GP may be keen to get you off Pred, but no doubt PMR will have other ideas..
Too many GPs are -
a. Are used to prescribing steroid for short term occurrences - just a few days or weeks, and
b. don’t understand PMR full stop, and are scared when patients need steroids long term….
PMR won’t be rushed….it’s self limiting-and no one can say how long that will be -some doctors can’t hack that scenario -but it just makes things more difficult for their patients.
If you’ve the strength and in own time, have a read through this -
yes I've read the official guidelines on it, the ones the docs follow, and they seem to be pretty much a one-size-fits-all guide which is no good at all really as we're all different. I'll explain my thinking to the doc on Monday ( if I get past the dragon lady) and hopefully get her to increase my dosage accordingly. She seems like a nice intelligent lady without a big ego as I've chatted to her at length as far as time will allow for these phone calls, although I've never actually met her - sad times we live in huh..
Yeah the guitars... I keep intending to get back and do something with them like making a recording or a video or something but that's a major undertaking which requires both a lot of thought and physical effort, and standing for any length of time with a guitar on really hurts my shoulder at the mo'. Maybe one day soon I hope...
Agree the on the one size fits all -and definitely lean towards a straightforward version of the illness-but as we know “life has has a habit of getting in the way” and throwing a very rigid plan over the cliff. Which is one reason why I penned intro post (hopefully then the patient, if not the doctor understands) and why this forum is so busy. Good knowledge of both illnesses are sadly lacking in the wider world
It’s still very difficult at the moment to get to see GP (shouldn’t be) -fortunately my GCA had long gone before Covid arrived….
Remember that feeling better does not mean you are better. The disease and the steroids are probably weakening your muscles, tendons and ligaments making them more vulnerable to damage. Weight training was possibly not the best idea. I shouldn't try going back to it in the near future.
I just tried to reply to you but it seems to have vanished..??🤔 I'll try again.
Yes I do take your point about the weight training but it's something I've done since I was a lad and is ingrained into me, almost like an addiction, or perhaps more accurately described as a way of life. I also read that resistance training is desirable to combat the wasting effects on bone and muscle caused by prolonged use of prednisolone, but I guess they meant gentle training rather than full on like I would have done before PMR! Likewise the cycling which I've done all my life until now but even that has become impossible for the moment.
The cursor should appear automatically in the reply box so you can just start typing. It isn't - you type away and nothing happens! It has been complained about and (as usual) nothing done! Just check where the cursor is before typing!
I was also very keen on exercise, athough not gym based, and walked for miles. I was proud not to get in a vehicle if my feet could take me. I have found it hard to adjust to my sudden downfall.
My warning is based on my experience of exercises carried out under the instruction of an NHS Physio. He was guided by my MRI, ultrasound, Xray and blood test results. He said that his suggestions could not injure me. I don't agree.
There's no doubt about the fact that this is a life changing event when it happens and compromises have to be made whether we like it or not. I've always been prone to injury in the gym so when the wrist thing occured my first reaction was to put it down to carelessness, not warming up properly or bad technique. Now, having doen a good bit of reading I reckon I know better and will be much more careful if I'm ever lucky enough to be able to get back to training of any kind. The main thing about any kind of sports activity is to listen carefully to what you're body is telling you and if it tells you to stop it's best to take the advice immediately rather than ignore it for the sake of those last few vital sets or reps.
Maybe I will. An old mate of mine is always reminding me that "anything can happen" although my knees are shot to bits and have been for years (not PMR related) and I can remember some of the steep climbs up and down involving hundreds of steps to and from high villages on the way up to Annapurna base camp. Still, you just never know eh...
I find that when you get to a single figure dose that increasing by 5mg for a week or so to hit the PMR on the head then drop back to a bit above the dose where you had the pain and then just carry on from there works well. You have actually dropped quite quickly. I found that below 7mg things got difficult with me. My adrenal glands complained about waking up and I tended to have other symptoms from just the PMR. I also had the ‘deathly fatigue’ which you do not seem to have got. Possibly because you have reduced quite fast.
"deathly fatigue"! I like it..😂 Yes I have had that, and still have it. Apologies for neglecting to mention it previously. Ever since this whole nightmare began I've had a habit of spontaneously falling asleep in my chair several times a day for cat naps of 15-20 minutes or so and it's all very annoying. I also have a constant general feeling of malaise, lethargy and general laziness which I absolutely hate.
How on earth can you tell that your adrenal glands are complaining..?🤔 Are there specific symptoms for that?
Yes, this whole 1mg every four weeks now seems a bit ridiculous to me so I'm going to change my tapering regime to slow it right down.
I think 1mg reduction under around 7mg (10mg in my case!) should be reduced to 0.5mg. Give it a go. Adrenals often start to complain round about 7mg. The symptoms tend to be different from PMR. Your description “constant general feeling of malaise, lethargy and general laziness” is a pretty good one. My problem is that I go to sleep in the middle of TV programs. I then have to try and find out when I went to sleep so I can watch the bit I missed. It gets quite complicated.
Ah yes, me too. I often find myself in the middle of a movie on Netflix or Amazon Prime which I have to switch off for a while because of an overwhelming feeling of tiredness which I can't resist. I'm ok again after 15 mins or so of shuteye so I guess that's the adrenal complaint
yep..😂 I can't help chuckling because you might as well be describing me. It's comforting to know that others are experiencing the same things I am. The falling asleep thing isn't in itself bad as it's pleasant enough but it really bothers me that it happens so much when it never happened before - at all, ever.
Welcome! Others have already responded to your questions about dealing with a flare. Many good suggestions thus far.
It is a lot to process a PMR diagnosis and then follow through with the necessary adjustments. You will come to understand and listen to your body/symptoms with time.
This forum is a wealth of information and support which is so valuable, especially in the early days. I especially feel bad for the active folks whose lives are changed so greatly with the emergence of PMR. The inflammation in the major muscle groups seems especially cruel for folks who were previously active/fit prior to diagnosis (although we have all have suffered with PMR). Take comfort in knowing that you can eventually resume your active lifestyle, just in due time, slowly, with a gradual return.
Of note my hubby is a huge “guitar guy” (he plays, I sing). He is also a real fitness fan and used to regularly exercise in the gym (including lifting weights). He has shoulder injuries now that prevent overhead weight lifting, but he has managed to revise his workouts at home to meet his needs without causing further damage. Being flexible and patient is key when making such adjustments.
All the best getting the inflammation better managed before you proceed with a slower taper next time around. I find dropping .5mg every 6 weeks is working well.
Thanks for responding. I would certainly agree that its a difficult thing to accept when it brings such hugely negative life changes with it, but I'm getting a much more positive feeling now with all of the responses I've had on here and it's both comforting and encouraging to know that many others are going through the same struggles as I am.
I also have a "fit persons" job being an electrician and it's hit me hard there too so that now I can manage only the smallest and easiest of jobs, but I'm self employed and can pick and choose my hours and which jobs I want to accept or reject so I don't mind that as much as I mind not being able to get out along the clifftops on my bike or into the weights room pumping iron like I was still 25 years old ! My biggest disappointment regarding the weights is that I can no longer keep up with my 20 year old son who has now overtaken me in terms of capability in all things physical. Up until last year we were pretty well matched and could train together at more or less the same level, but now - big sigh....
Like your other half I've always been prone to lifting injuries and have suffered a lot with the same injuries recurring over and over for many years. I finally learned after 40 years of training that some exercises are designed in such a way as to more efficiently injure you than to work in your favour, especially when the rotator cuff joint of the shoulder is involved, so that now I limit my shoulder exercises to those which don't put my shoulder into any unnatural positions of hyper-rotation. Things like upright rowing with a bar or pressing behind the neck are a big no-no as far as I'm concerned and I don't do them at all now, but that's just my opinion from my own experiences with them - everybody is different.
Yeah the guitars... been a major part of my life since I was 11 years old (I'm 62 now) although I sold off a large part of my collection in recent years and now only have 5 left which I can't bear to part with. I can't sing for peanuts though..😂
I've taken the advice offered on here and upped my prednisolone dosage this morning from 4mg to 10mg which I'll stay on for a few days before dropping back down to 7mg for a much slower titration from that point onwards. I'll stay on 7mg for at least four weeks and then decide if I need to do an extra couple of weeks at 7mg from that point or if I feel well enough I might start reducing again. I'm still considering which way to go with the reduction but after this experience with the flare I like the look of the dead slow and stop regime which seems very gradual indeed, although I'm still also considering the 0.5mg drop every few weeks too as you are doing. I like the idea of doing that every six weeks which now sounds a lot more sensible to me than 1mg every four weeks. I'll decide nearer the time.
I think you have worked it out for yourself - the speed of reduction is less of a problem than overshooting the dose you are looking for. I suspect you should have slowed right down at 9mg when you got those first niggles. If they stay steady that is one thing - if they increase, however slowly, it isn't.
If you look carefully at all the guidelines, somewhere in each you will find a tiny caveat: "the taper may need to be adjusted for the patient" or the like. But they almost NEVER register it. I was in a meeting with Prof Sarah Mackie, probably top in the PMR field in the UK, and she was talking about adjusting the taper for the individual patient when it goes pear-shaped. Bless her, the expression on her face when the patients present told her that many doctors just go back up and do exactly the same thing again. And again ... GPs definitely need more education - but there are specialists who aren't much better!
Once you get below your target, the lowest effective dose, there will be a bit of inflammation that isn't mopped up and over time it will build up again, like a dripping tap will fill a bucket sooner or later and overflow. It really isn't a case of "a wee bit pain is fine" - it depends on what is causing that pain. If it is the PMR - it isn't! It doesn't matter how much the GP wants the pred dose lower - not up to her, PMR always has the final word. Too low pred - and the inflammation will be back, Getting into a yoyo pattern with the pred dose is the worst thing you can do - because every time you get a solid flare and have to raise the pred you run the risk of it becoming harder to reduce the dose again.
My first sign of a flare has always been pain in the base of my thumbs and into the wrists. You learn to recognise your marker and use it to avoid trouble.
Thanks for all of that. As I said on one of the earlier posts I've been rather blase and naive in trusting to the doc and the standard guidelines for steroid dosage to fix this, but I'm learning fast. Having said that though I'm worried about speaking to the doc and telling her my plan in case she disputes it, and she's the one who supplies the meds so I need her on board and cooperative, but as I also said earlier she seems like a good person and is always willing to listen ... I read the analogy of the dripping tap in the bucket too and thought it to be very enlightening, and I also understand the concept of titrating too fast and overshooting the end point which I remember well from my days as a fairly indifferent chemistry student.
I started getting the wrist pain months ago but still can't decide of it was steroid withdrawal or a sign of the PMR manifesting again as it started originally in my left shoulder and that's still the place where I feel it worst of all.
Anyway, once bitten twice shy as the old saying goes and now that I'm aware of the danger of too fast reduction and resultant flares occurring I'm determined to get on top of it this time by using a much more cautious approach.
I think you are the first person to recognise titration from chemistry - maybe a reflection of the fact most members of the forum possibly never did science at school!!!!
The dripping tap analogy is one that Prof Sarah Mackie in Leeds loves - so maybe you could use that and the chemistry analogy with the doctor? They will have done chemistry!!! Not sure whether your doctor will know much about Prof Mackie - but she is a great advocate of slow tapering and that the idea that PMR only lasts 2 years is a myth!
Haha. Well I was never great at chemistry but remember titrations well enough. My teachers used to scold me for doing them too slowly and would always urge me to go faster in case I ever had to do it to make a living - sounds familiar huh... But I was alway worried I would put that one little drop too many in and pass the end point so I kept on going slowly and always got there in the end. I've been practicing in my head how I'm going to put that all to the doc tomorrow.
At age 65, I had all the symptoms of PMR: Rotator cuff pain, hip pain and weakness, severe wrist and finger stiffness (to a point where I could not hold a glass of water in my hands). Doctors were recommending shoulder surgery and carpal tunnel surgery.
The only medication I had been taking for the prior 3 years was Simvastatin (for high cholesterol). When I stopped, cold turkey, all of those pains disappeared within the month, I have never taken a statin again, even though most doctors insist every person should be taking them.
However, at age 70, I woke up with full on PMR symptoms. Same exact pains, only all at once. Couldn’t even roll over in bed .
PMR is under control now, after 2.5 years. But I never hesitate to relate my history, in hopes that doctors and the pharmaceutical companies will come to their senses about statin drugs. Because I fully blame Simvastatin for my getting PMR.
I agree about statins. I've never experienced them myself and never will as they have such a bad reputation now. So many doctors seem to be in the pockets of the big pharmaceutical companies which I suspect is why they (statins) are pushed so hard.
My doc completely ignored me when I said I was having severe trouble with pain and stiffness in my fingers and didn't offer any comment. Likewise when I mentioned bowel problems which led me to believe those must be unrelated problems. I think differently now.
I too also almost reached the point where I couldn't use my hands at all and that was just last week! I couldn't open a jar of jam or pick up a 2 ltr carton of milk but my symptoms - all of them - have already eased considerably since upping my dosage just yesterday.
Oh I get the unable to roll over in bed thing - absolute nightmare isn't it. It's the shoulder pain that really gets me there.
I've often wondered about the how and why of it too. My wife has a theory that it's been caused by accumulated exposure to weedkiller which I used quite a lot of over the last 20 years but it's purely speculation.
There is no single cause - but it is almost certainly an accumulation of insults to the immune system over your lifetime and eventually something tips it over the edge and it goes haywire, attacking the body. Those insults can be injury, illness, emotional, physical, environmental, chemical - amongst other things. So your weedkiller could be implicated - but it isn't likely to be the only thing.
After 33 months I still haven't learnt that I need to pace myself. Sad. You mentioning electrical work; I have been inserting an extra socket into my ring main - it's taken over a week, a little at a time. I'm still exhausted. And my wrists are suffering. Almost done but I'm taking a couple of days off before I connect it up.
I'm on 4.5 mg so lethargy, dizziness and deathly fatigue - yep it's all there. And irritability. And sleeplessness with quite severe pain on waking at 4am.
And - welcome. You have discovered how helpful this site is with good ammunition for talking to GP's and, as I found, rheumatologists who know nothing about PMR
Ah mate. I'm sorry you have so much pain, but wiring sockets in isn't exactly an easy task with PMR in the mix, and is most definitely even at the best of times very much a young man's game, so take it easy and be careful with Stanley knives and the like. Are you wiring it directly into the ring or as a spur? Don't forget to sleeve your cpc (the earth wire) and be mindful of your polarity.
The critical need to pace oneself is the single biggest lesson I've learned in my couple of days on this forum.
Not a spur, it's actually two double sockets to make life easier in communicating both from the front door and also between my partner and myself and the stairlift (partner has dementia). Yep sleeves on the earth. Stanley knives - oh so careful. Each piece of the job takes care and thought and eyes wide open. I enjoy it but it is so tiring down near the floor.
BTW who are you calling old? I'm only 83. 😀 Without PMR it would take a fraction of the time. But, hey, we have a lifetime before us.
😂 Well said and well done! I struggle at floor level too these days and I'm a mere whippersnapper at 62 but I've been down there all my working life and the knees are shot to pieces. PMR dictates that I can only do the smallest of jobs now - I'd even think twice about wiring two double sockets into the ring - but at least I only have a few years left to go before I can knock it all on the head for a quieter life.
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Feeling a bit down and lonely today so logged on here to connect with 'my (PMR) tribe'even though I should be doing other things
