I was on prednisone for PMR for 10.3 months starting in 2023. I was very fortunate in being able to get off prednisone quite quickly. However, I don't feel that I have truly escaped PMR.
I'm a relatively frequent exerciser, and feel like I have essentially permanent “delayed onset muscle soreness” (aka DOMS). Yes, I'm 79 and don't expect to recover from exercise in the same way I did when I was 19. However, I sometimes think these days that I never recover. This wasn't the case just prior to the onset of PMR.
My inflammation markers are currently normal. But my subjective feeling is that something is just not quite right. The discomfort is certainly low grade compared to the early PMR days, and so I doubt that it would justify a low dose course of prednisone.
I suspect that there is no solution to my “problem”. There still isn't a pill for everything in life. However, I would be curious to hear if there are others who have a story to tell somewhat similar to mine?
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soreoldbiker
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Hello. To have come off Pred in just over 10 months is extremely good going. However, your feelings regards not feeling right with a low level of pain that you can’t shake sound suspiciously like PMR wasn’t really done when you finished Pred and inflammation is ramping up. Relapse after zero does seem to crop up within the first 6 months if remission wasn’t really achieved. Inflammatory markers can lag behind symptoms too.
First you could try and proper rest from exercise for a week or so to satisfy yourself that it isn’t DOMS, especially if your body isn’t given much time in between exercise sessions of a couple of days, or if there was residual pain that you expected to ‘run off’ each time. If your pain persists then restarting Pred is likely necessary. What you don’t want is for it to get going such that a small dose like 5mg no longer does the trick. You’ll get more replies so sit tight.
I was on prednisone for a total of 16 months- I started at 20mg but tapered down quickly in the first month. I was at 5mg for a few months then slowly to 3mg and gradually weaned off. I was on a very low dosage for a while and sometimes I upped the prednisone for no more than 3 days and then went back to my low dosage. I didn’t increase it dramatically say I was on 1mg I’d increase it to 5mg for a couple of days and then go back to 1mg. This was not a regular occurrence. After I was off prednisone I still had twinges of pain, didn’t feel like my old self and like you I thought this was it.
Independently to this, I wanted to see if I could increase my vitamin D count and started taking take 3 x 1000 mg vitamin D. Happily this eliminated my aches and soreness. I can bend down with no soreness like I used to and I’m walking at the same brisk pace that I thought I’d lost.
That’s a good point. I felt achey and tired before my GCA and got my D tested and lo and behold it was in my boots. Three months of loading doses got rid of it.
To be honest, I doubt very much your PMR has gone… yes you may have reduced quickly and felt good at that time, and your blood may be normal present… but that isn’t full story.
As we say over and over, it not a case of taking X amount of Pred for Y months and the PMR is gone, it’s not that type of illness. The illness is self limiting and all the time it’s active [and no one can say what that might be] you need some Pred to manage the inflammation. For some that might be 10mg, 5mg or even 0.5mg - it all depends on the disease activity, and if you are not taking the correct dose for YOU, it enables the inflammation that is shed daily to build up again.. and invariably you then need a bigger dose to get things back on track.
As many have discovered a very small dose is doing at lot more in the realms of disease control than you think.. and your comment about low grade discomfort would to many of us indicate that your PMR is still very much there.
Not sure all is down to DOMS - and SnazzyD has given advice on that.
Personal opinion, after following advice already given, I’d restart the Pred at a very low dose - and remain there for a few months to gauge things.
If it is down to PMR, then there is a solution - and a very simple one. Pred!
I am much the same as you...quickly off the prednisolone but still a bit achy some days. I am happy to put up with it as I don't want to become dependant on steroids. I figure that if I keep active, my body will look after itself for the most part.
I saw you had an earlier post on "napping". I am up at 5am every day, physically active for most of the day except for a 1 hour nap after lunch. I close my eyes and I am straight out! Then bed and lights out by 11pm...and repeat!
Hi. It's not really possible to get 'dependent' on steroids that are needed to keep active and pain free. One can over-rely on it and choose not to reduce or stop it, but that's not the same thing.🎄🎅🎄.
I’m interested in your use of high doses of vitamin D. I’ve heard of someone with lupus who has apparently benefited from high doses of vitamin D and I’d like to know more about its use with pmr
"feel like I have essentially permanent “delayed onset muscle soreness” (aka DOMS)"
My suspicion is that what you are blaming as DOMS is actually PMR because that it what it often feels like - and no, a "course" of prednisone isn't the answer with PMR. it is a chronic illness and you taper from the initial dose to find the lowest effective dose. While it sounds crazy, it isn't that unusual to find that that lowest effective dose is as low as 1mg/day to keep the inflammation due to a low activity of the the underlying autoimmune disorder controlled. Without it, the inflammation slowly builds up over time until you reach the sort of state where PMR may be diagnosed by a good doctor. But raised blood markers require a fair amount of inflammation to develop and they don't always happen in PMR after pred even if they rose initially. Symptoms are always trumps.
However, both low vit D AND incompletely returned adrenal function can also cause aches and pains. Even after a relatively short time on enough pred to suppress adrenal function, it can take months to recover and as we age adrenal function may not be at its peak anyway.
Another factor is that muscles are not improved by PMR or pred and we consistently warn about exercise and avoiding DOMS. When you start to build up your exercise post-PMR and pred, you MUST do so slowly. And when I mean slowly, I mean starting as an absolute beginner at a level of both intensity and duration that avoids even a sniff of DOMS. Then you build that up a few minutes at a time, always with rest days between exercise days until you can feel the effects of yesterday's session. And then you go back to the previous level to train before starting to increase again. It sounds crazy I know but you need to avoid DOMS like the plague - above all severe DOMS.
You obviously know what DOMS is, it is the pain due to microtears, formed by having torn the links between parts of muscle fibres - and them healing results in the training effect. But where pre-PMR and pred that usually happened in a day or two, now it can take much longer to heal. If you then exercise while you still hurt the healing never gets to take place - and you keep hurting. If you have caused a lot of these microtears and then continue to use the muscles, even just in ordinary daily activities, they may never heal. That degree is unusual but it does happen and then it may take many months of rest to recover. You can't exercise your way out of PMR/GCA muscle aches. There are one or two former athletes on the forum who can tell that story.
I too dropped quite quickly (not done yet) and feel much as you do, a small background ache. My understanding is that PMR remains, until it goes into remission, perhaps after 18 months or two years if we are lucky. From what I read on here my levels of aches are no more than, and much less than, many who maintain a dose of Pred to keep aches at bay. My own decision is that I will live with this low level of aches and protect my health (as much as I can) with continued gentle exercise and anti inflamtory diet and no or minimal steroids. For me, it is about choices.
Ah, but there is a world of difference between NO and MINIMAL steroids. The idea is always to find the lowest effective dose, at any level, and for many that will be well under 5mg. 1mg may do the job - zero may not.
Interesting that you should have this problem as it sounds not disssimar to my own.
I got PMR in July 2024 and at end of August went onto Preds with pain stopping mid October. I have been reducing from 20 mg to 15 to 13.5 and now on 12.5.
I exercise mainly walking , in Spain we averaged over 13000 steps a day for 4 weeks. Now returned to UK and doing much less, average 7500 per day.
But I am getting slight pains in my left shoulder and now in my right hip when I walk. It doesn’t stop me from doing anything but I’m having to be careful. The pain is much much less than the PMR but similar. I am worried it might be the PMR lurking around
My question, like you, is this because I might have over done it although it doesn’t explain the shoulder (we’re not cycling at the moment)
Fly, good point re the luggage but we did try to avoid overloading either arm. No direct lifting and using only the right arm
However I don’t think that is the problem as it was painful before we flew home. The PMR pain largely gone thank goodness but I’m left with this nagging shoulder and the occasional right hip pain when walking.
My initial treatment of 15 mg didn’t work as I take phenytoin. After 5 weeks the GP put me on 20mg for 2 weeks & advised take the phenytoin in the afternoon. This worked, pain stopped & I then dropped to 15mg on 25 October. Because of the shoulder I kept at 15mg for 4 weeks not 3 and on 26 November I dropped to 13.75 and finally to12.5 on 6 December. All the time the shoulder was never 100%.
I was coming to the view it’s just something I’ll have to put up with but I did have this underlying worry it might be the PMR lurking there. And the worry about it reducing my walking.
It could well be bursitis or synovitis in the shoulder - I had it badly in my hips, less badly in the shoulders but feet and hands were bad and while a lot of the pain and stiffness was gone in hours with 15mg pred, it was 3 or 4 months at 15/12.5 before that eased completely. It depends how deep-seated the inflammation is. The hip problem is persistent for me and needs treating quite aggressively to give me periods free of pain. The speed doctors tell patients to taper is quite fast for many - despite your weeks at 15, we'd have said 3 or 4 weeks at 20 before a much slower drop via 17.5. Unless you are sure all the inflammation is well controlled, it can be quite difficult to taper comfortably.
Thank you PMRpro, I’m sorry to hear you too get these pains but it is comforting to me to know it is not unusual. Certainly the NHS advice is for an early reduction in the Preds whereas the patient experience I have read about here suggest it should be much slower. The difference is that those on here are those with real time experience. I must be more careful in any case I think
"The difference is that those on here are those with real time experience."
We are indeed and some of us have been here long enough to know that the results in the past where you were left at 15-20mg for a good month got much better results. The fear many doctors have of using pred does patients with PMR no favours. If only they would LISTEN to the patient.
Yes, despite my PMR pain hardly reducing after 5 weeks (although the advice from NHS that symptoms should be gone by 3) my GP was noticeably unhappy with increasing the Preds from. 15 to 20.
It is lack of experience I think. My experience at 81 is that I had steroid injections in fingers and wrists which resolved the pain of arthritis and so I (and others like me) are much more relaxed about steroids. They work. But it shouldn’t be like that.
We wave the Guidelines about starting dose - and if a GP thinks they know better than the top experts in the field from all over the world they need a reality check. And with the best will in the world, at 81 you aren't ever going to clock up the sort of dose I have already and I hope I have a few years left!! But pred gave me my life back and still makes it worth living. Five years of daily pain and disability with no interest on the part of GPs was enough. Without pred I doubt I'd still be here.
They are all over young people with mental health problems - but a few mg of pred for a pensioner is the end of the world.
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