Hi could I ask if it is normal to suffer aching joints & muscles after stopping prednisolone?In mid Nov I managed finally to taper off prednisolone after 3 yrs treatment for PMR.
I felt ok and very pleased with myself.
I then caught covid ( badly) in early Dec which left me fatigued.
I went off to the Canaries for 2 weeks early January which helped the fatigue. But on return noticed increased stiffness and muscle ache.
Any advice welcome as to whether this is all part & parcel of withdrawal symptoms. Was hoping to be skipping about by now.
Also is it better to take it easy to avoid any recurrence of PMR?
Thanks
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lilydunn
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Ah well, you will one day, but a few things to remember,
It can take up to 12 months for adrenals to be back to tip top condition - and although you felt better on holiday, relaxed atmosphere and better weather will have helped, now back to normal you might struggle a bit,
Covid will have knocked the stuffing out of you, so could still be a hangover from that,
You are a few years older than before PMR/Pred so you need to factor that in , and Pred will have masked ‘normal’ aches and pains of life,
And finally- your PMR could still be there - 1mg or even 0.5mg can keep it under control - stop that and it starts to grumble again. Hope not, but you do need to be aware it might be. For some it lasts longer than patients wish, and doctors think… and a few months after finishing Pred is about time for it to resurface. A very small dose of Pred might give you the answer, if you still have some. .. and I think I might be asking for a blood test [assuming yours were raised with your PMR] .
I suspect that your PMR hasn't entirely gone away - doctors may claim it is gone in 2 years, in real life 4 or 5 years is more common I fear.
As little as 1mg, even 1/2mg, will keep low level disease activity under wraps but the step to zero pred is too much and it is why we say those last steps should be very very slow and protracted.
To some extent a degree of aches is to be expected as your adrenal function adjusts to there being no pred in your system, but they should slowly improve with time. If this is the effect of the dripping tap of inflammation building up over time though, it will slowly but steadily deteriorate. And in that case, the sooner you admit it and get pred again the less you will need. Having got down to zero, the chances are that 1mg might be enough but first you will have to springclean to clear out accumulated inflammation. The usual advice for that is to go to 5mg above where the flare happened and once you feel better, drop back to 1 or 2mg and see how you get on. That applies if you improve in under 2 weeks, if you don't you may need a bit more and then taper a bit slower to a lower dose but not too low.
This is such a useful reply, Pro, that I have copied and pasted it. I hope you don't mind, but it will be useful to show rheumy. I'm in a similar position, stuck on 1.5mg/2mg, but he insists that my PMR should have gone by now and I should be off pred. He says to continue tapering and if I get any stiffness etc he'll get me a PET scan to see what's going on.
Copy and paste ANYTHING I write here if it is useful for you. All my posts are public, not even restricted to this forum.
What a waste of a PET scan and money ... Tell him to consult Prof Sarah Mackie about how long PMR lasts. In fact - she wrote an article about that for Myth Busters last year. Were they also put in the Newswire????
is the 2 year one. If you look at Fran_Benson 's profile page and scroll down her posts you will find links to the rest. Give THOSE to your rheumy - from the top PMR professional in the UK and the Charity. Not just a patient ...
My experience was as your two replies indicate. It actually took me three goes to get ultimately to zero.
The first time, it was after 11 days on zero that I realised pmr was still ticking along, and I returned to 5 mg, then seven months later I tried zero again, but this time it was 108 days until again I felt the need for more pred - this time 3mg. It was another year before trying again, and I have now been at zero for over a year. I’m thinking I should be ok now!
Clearly, not everyone takes this long, but I guess others will understand that this is how it can be. Hopefully though, it will not be so long for you.
Can't add anymore to the options that Dorset Lady said, except that with the double whammy of COVID and a busy holiday after you had just started coping at Club Zero before your body had recovered strength again it would not be surprising that you were having extra aches and Fatigue.Even generally healthy people are getting these types of symptoms after the infection , or can feel run down after a trip away.
It might be a good idea to give yourself a very relaxing month of 'Me Time'.
A time to slowly rebuild your strength through good nutritional food , relaxation , gentle exercise ( possibly even slower than exercises you were managing to do whilst still on Pred) with the diary cleared of big jobs , busy days out, and the big plans you had been wanting to start as soon as you were PMR free. Slow your Pace to allow yourself to get used to coping with how your body feels without the medication as support.
I think that's worth doing once you finish any long term medication or finally push a long term illness out of the door.
We often fall into the trap of hitting the ground running instead of thinking of slowing our step a bit more and then come an absolute cropper!
We should do this, not just to try and prevent symptoms coming back but to give our bodies all of our energy and attention for a while to help it get over the chemical change and restore it's strength before we start to slowly push it to do more activities drug free.
Pacing ourselves should continue even after PMR, or any other illness, is in the rear view mirror, because if there was one positive lesson we learnt while we were ill, it was not to push or over stress ourselves to keep healthy and feel good.
Get your basic vitamin blood tests done, and get a copy , even if they are in normal range . If some are low they can cause symptoms of Fatigue and Pain too , and make it harder to recover , so you can choose to adapt your foods to help your general health requirements and improve more smoothly.
Request Iron/ Ferritin, Vitamin D , Vitamin B12, Folates , Kidney / electrolytes and Cholesterol.
Explain to your GP you are trying to be proactive in your recovery now you are off Pred and want baseline results to help you improve your diet based on your needs.
Get your recommended water everyday too.
Listen to your Mental needs too . Sleep , rest when you need to , try relaxing breathing , make a simple build up plan for the year ahead rather than jumping back into old habits. Read a book , watch a film , enjoy the outdoors.
During that Self Care time listen to your body , try other medications or adaptions and slower exercises to reduce the pain, and if it turns out that despite your efforts you feel like the symptoms that you have do feel like PMR returning , get yourself checked over and return to the low dose you were on until PMR is definitely out of the equation.
It takes as much time and patience with yourself in the Recovery Phase after an illness as you needed when you were still under treatment. Take care , Bee
Hi Lily.I am in a very similar situation to you. After a couple of weeks at zero and with the onset of winter I started to feel the pain ! I went back on to 1mg and after a few weeks half. It seems to of done the trick. I realise I am 4 .5 years older than when I started Pred so I am making some allowance for the onset of old age, and the fact that my adrenals probably not recovered but if can remain very active on 1mg or less then I am happy. The blood tests have never been conclusive for me . I have just learnt to be able to tell when it's PMR and when it's not !
Similar to the responses above after 4 years I thought okay no more Pred. Except I’d awake with aching upper arms little tension back of neck & possibly calves. Hips fine. So following a lot of advice I have decided to stay on 1mg each morning as a maintenance level. Even 2mg if after previous day’s exertion (someone’s got to rake up the leaves) inflammation still nagging.
Something strange though has happened to my hands seems like symptoms of carpel tunnel syndrome. Comes & goes. It crosses my mind my outstanding symptoms may be imitating PMR I may have fibromyalgia or RA. This disease PMR is difficult to fathom at the fag end of symptoms. I decided to wait a few months more stay on Pred before investigating further.
Carpel tunnel can be allied to PMR, Pred will relieve the inflammation and swelling that causes it so when you get to lower doses it may rear its head. Is it worse after using your hands more - like raking the leaves?
Not necessarily as day wears on stiffness gets worse particularly at base of thumbs. Driving now never quite feel total connection to steering wheel have to really concentrate on grip. Writing awkward and touching anything metal a no no. With your reply stating a connection to PMR, I think for a few days will double Pred dose to see if this helps. It’s like a delayed reaction from brain to hands. I keep opening & shutting fingers to keep up flexibility.
As few times before appreciate your response to my input.
Increasing steroids sounds like a plan - see what happens..
Would also say if stiffness gets worse as day wears on your current dose is not enough to last the 24hours a slightly higher one did. Which also resonates with your need to up dose on some days.
Personal opinion -if 2mg gives you a better QOL than 1mg does, then stick with the 2mg -certainly for now. Or 1.5mg -as many will testify 0.5mg can make a big difference…
More pred does sound like a plan to start with. But it is unusual for PMR stiffness to increase during the day. Have you discussed it with your doctor?
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