Good morning all . I was diagnosed with PMR in June this year and after initially responding well to 15mgs had to increase to 20mgs for 2 weeks before starting a very slow taper. My pain is so much better now ( virtually pain free on most days) and during September I started to slow wean from 14mgs to 13mgs using the dead slow method.
Over the last few days of the new 13mg dose I have a little stiffness in my shoulders and upper arms which is there mostly in the evenings.
I am still taking 10mgs at between 0200 and 0400 depending on when I wake up and the second 3mgs at lunchtime about 1300.
I am taking cocodamol (15mgs codeine ) in the evening and before I go to bed.
Obviously if the pain was to worsen I shall have to admit defeat and go back to alternate days of 13/14mgs but should I ride the aches for a few more days and presume it is withdrawal pain rather than a looming flare up?
I have not increased my physical activity even though my pain has improved as I understand this can also be counterproductive. Walking the dogs for 3 miles every morning is my limit but before PMR I was doing 8miles and gym 3 times a week.
looking forward to any advice.
Written by
larkthebark
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Hello there. I’m confused, you say were using a slow method but if that fails you go back to alternate 13/14. Does that mean you’ve tried alt days before and then went on to the slow method? You also say over Sept you started the slow wean but then say “over the last few days of the new 13mg dose”. Does that mean the slow method has already got you to the target of 13? It might help anyone else as foggy as me to state exactly how your tapers went.
My other query is why do you need to take co-codamol too? Is that for something else?
Hi Snazzy, slow method was started as 6 days old dose 1 day new etc and tapered down until I hit 13mgs. been at new dose now for 3 days. Feeling ok and taking it easy while body adjusts but as I said just a bit more achey in upper arms and shoulders which is where my worst pain was when I started this disease. Like most PMR sufferers juggling between pred and flares is not easy and just wondered if I should continue to have a few restful days and hope this is just my body adjusting to the reduced dose.
Although I do realise that cocodamol isnt always helpful it works for me. The paracetamol as far as I am aware aids sleep by dropping your body temperature and the codeine helps my very active intestines which has been a problem ever since this started.
In answer to your question I only thought that going on alternate days may be easier or should i go back to 14 mgs and start again on dead slow taper ?
steroid withdrawal comes on almost immediately on taking new lower dose and usually if you are doing an “overnight” reduction - thats why the slow plan was devised, to stop that effect.
If your pains returned on the last few days of the slow taper, to me that suggests 13mg too low a dose.
Why are you splitting dose, if you are taking the majority early hours? It’s normally recommended if mornings are bad..... either split dose (am and evening) -or take full dose like you are - not both. But if you want to stick with splitting, if you took the 3mg in the evening you may not need the cocodamol.
3 miles a day (certainly in one go) would probably be too much for most people this early in their illness/treatment. It may not seem much to you looking at previous activity- but would say it’s too much for your present state of health. Two walks of lesser mileage might be better!
The fact that you initially responded well to 15mg but then needed to increase suggests you have tried to continue life as normal and have not accounted for the fact you have a serious illness and need to learn to pace yourself - despite thinking you have.
I am taking split dose as recommended by reading many posts on this site and it was suggested that I take the second dose later in the day to help spread the effects of the pred to the evening. I do not take pred before bed as apparently this can cause problems with sleep and it is when the adrenals normally kick out cortisol.
while I appreciate my adrenals are probably in suspended animation now I prefer to take my pred at the time when the inflammatory mediators kick out.
I tried reducing my early morning pred but found it actually meant less pain relief during the day so have stuck to the majority of the dose then.
You are probably right about the exercise levels and have cut down on the walks during tapering. I certainly will not be tapering any more for at least 2 weeks and then back on dead slow method again......
If you have any further comments I am open to all information and hope I have explained my methods.
Pred can cause sleep issues, but 3mg is unlikely to have much effect, and taken at 6pm would be okay I think...although maybe not at 10pm.
At the level you’re on, your adrenals have gone into suspended animation as you say, so no need to take them into consideration for the time being.
I would still wonder whether you are actually on enough Pred to get you through the day - so good idea not to try and reduce any further until you are sure.
As SnazzyD asked - is the cocodamol for other issues, as it will not help PMR.
One reason for the DSNS approach is to reduce the likelihood of steroid withdrawal pain - the smaller the change and the slower you let your body get used to the new dose, the less likely you are to have withdrawal pain.
It also says in the DSNS approach that you can stop anywhere - it is still less than the old dose. So any selection of old and new that works for you is fine.
Having appeared so late I'd be sceptical it was withdrawal. You say you haven't done more activity - but did the dogs pull more while being walked? Or have you lifted anything in the last few days? I could get sore biceps/shoulders from carrying the shopping in from the car for example.
I always walk the dogs with my husband and have not taken hold of the leads since diagnosis as my shoulders were my worst offender. I am very fortunate that all the severe pain in my hips and backs of knees disappeared before I even started the pred which has allowed me to continue with walks although obviously shorter and on the flat.
I did do 30 mins light gardening two days ago which is a first since diagnosis so it could be that. As you quite rightly say a slow taper should rule out withdrawal pains and I am extremely careful not to lift anything heavy.
I could not even lift a cup of tea without using two hands in June and this whole disease has been scary and life changing. I welcome all your advice and support and have realised so much that we are all different in our response to steroids .
Your comments are very useful and as you say you can stop anywhere in the DSNS regime if you feel you are going too fast.
As I suspected - how long did you spend on that "light gardening"? DOMS - delayed onset muscle soreness. In PMR you get no warning at the time, it may take a few days to develop and in response to something you wouldn't dream was too much and it will take longer to go. Patience now - and whatever you might usually do post exercise MIGHT help but no guarantees.
I only did a bit of weeding and tidying for half an hour. Only do a little of anything at one time to avoid over exerting my arm muscles. Will have to get my husband to do more !!!!!!
I really did find that gripping things repeatedly was enough to make my arm muscles sore - still does if it comes to that. Maybe 10 mins pulling weeds and 10 mins cup of tea????? Oh no - that means holding the cup!
Perhaps try a G and T. Glass is lighter than a china cup.!!!!!!
Seriously though I agree . It is the repetitive movements that can seem to cause the problems. When i finally go back to fitness classes swimming will be last on my list as I think breast stroke would be a disaster. However if they start Aquafit back I would do that because you use a variety of movements.
Its all a learning curve and I still think how lucky I am that I didn't get this till I had been semi retired for 5 years.
Whilst a nasty disease it is far worse for those trying to continue with a job and /or other commitments.
There's the answer - has to be wine here since either the G or the T is making the arrythmia horrible. Prosecco and wine are fine though
It is, it is always repetitive movements that are poison - hence ordinary gym bunnies have to think again. I loved aquafit even with PMR and no pred but there is no option for that here - and yes, breast stroke was an real no-no. Back stroke was great but not allowed in the pool.
Hello larkthebank, 3 miles a day, envious, very envious. I went from being able to walk ALL DAY, to 10 steps if I was lucky, over night, when PMR came along. It has taken over 2 years to manage 1 mile without having to stop and rest along the way. Happy for you that you can do what you do. Trevor.
I find lifting anything sets my pains off. Repetitive movement too brings the aching on. I used to walk 10 miles every other day and 7 on the other days pre PMR. I am now on 6000 + steps a day ie two walks with the dog. That is plenty without causing pain .
Strangely enough my very good friend who, like me, comes from Dover also has PMR. She has not been able to have a long walk for 3 years and is still on 8mgs.
We reckon our great great greatgreatgreat grandmothers were taken by vikings.
Seriously though I do feel very fortunate and my GP has encouraged me to carry on short walks provided it does not have any effect on my pain. It has kept me sane and you have to think of your mental wellbeing with this dreadful condition.
I am new to this condition. I was very active, hiking, kayaking, biking, skiing..etc and now if I walk more than 3 miles or do a moderate workout I pay dearly with pain for a day or two. Will that change? Any suggestions? I refuse to be sedintary. I'm on 10 mg prednisone and tapering...
It will change if you change your habits - all you are doing at present is asking damaged muscles to do more than they are able to and compounding DOMS that hasn't yet healed. Like your mother probably told you as a child, that spot won't get better if you pick at it!!
You need at least one day rest between activities - that doesn't mean do nothing, it means use other muscle groups. I discussed this at length with a local hospital rehab physio recently and he confirmed what I have said for years. And if you do too much to injury or illness damaged tissues you may end up unable to do much for weeks - not just odd days,
IF you start with a very low level and build it up slowly you MAY find you get back to maybe 70-80% of your previous levels in certain activities. It may be more. But you can't run before you can walk.
Michdonn was in a wheelchair at Easter, he could walk to the gate and back but no more. By taking on a progressive training programme by xmas he was back to teaching children skiing and the following summer was cycling up and down New Mexico mountains with his friends. He is over 80. He started with a 5 min out and 5 min back walk and added 1 min in each direction on alternate days, always having a rest day between to assess if he had pain. Having achieved a time he felt acceptable, he worked on intensity in a similar way.
Skinnyjonny was also in a wheelchair with PMR - last autumn he climbed Annapurna IV - he also says his recovery was due to very slow progressive physiotherapy, starting with hydrotherapy.
I totally agree with PMRpro that you should only do what doesnt cause pain and give your muscles the rest they so desperately need. I am just very lucky that the PMR has not affected my hips and legs but even then I took things very gently in the first two months and only walked around the garden to start with building it up week by week. I have not done even a moderate workout at all and used to do body combat, weight training, cardio step, cycling etc. and I do not intend to for a long time yet.
I have had very little pain for about a month now but the last thing I want to do is overdo it and be back to square one. My gym membership is cancelled and i am concentrating on learning German and making masks to raise money for The Dogs Trust.
Adapt to your new life for now and with patience the old one will be back !
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