Long story short - about a year ago diagnosed with PMR and a few weeks later GCA - 're' -starting on a larger dose of 60 mg Pred. I have tried to taper slowly according to my body's responses rather than any other criteria (my inflammation markers were never very high) - and my GP has been fine with this. I am now at 15 mg - after having tapered to as low as 12.5 mg with some symptoms returning. Thing is I have been back on 15 mg for a while - and I feel that this is right on the 'cusp' of what I need. I am noting however that while this level seems to control my PMR & GCA symptoms -(excluding as it does the bad fatigue and night sweats - I have experienced lately) - I am now getting back lots of the pre-pred aches and pains of general wear and tear I had in the 'old days'. I am a fairly physical person - we look after a small hobby farm ourselves and work pretty hard on it a couple of days a week as well as in our own large home garden. I am wondering therefore if the return of the sore lower back and touchy knees I am getting on & off is indicative of an overall increase in the inflammation of my body. Does his signify I am 'getting used to' (I have read somewhere our can bodies do this) the level of Pred I am on and that tapering will also become more difficult regarding the PMR/GCA - just curious about what others have experienced and all your 'wise' opinions.
Best wishes
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Rimmy
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Thanks Rose54 - even though I work quite hard some days I always try to rest in between - but I must admit I find it hard and I am still trying to learn to pace myself as much as I can. Up until recently the balance seemed OK but lately it seems a bit out of whack even though I haven't been doing much 'extra'.
What a wonderful question. I've been feeling the OLD aches a bit more as I've tapered to 7 and have wondered much as you do. I don't feel sick as I did when I was first diagnosed with PMR. My markers which were way high have stayed low. So I can only assume that my new normal is going to be more like my old normal, pre Pred..
I feared tapering quite a bit at the beginning. But I have found that PMRpro's 38 day taper has worked well for me so far. I'm on 7 now heading towards 6.
I never thought that one might habituate to a dose of Pred. I have assumed that the new aches and pains that are different from the old pre PMR pains and different from the PMR pains are the wasting effects of Pred on this old body. I'm hoping that at some point I'll feel like myself again old pains and all. That sounds pretty good to me.
Thanks Hindags - yes the Pred 'habituation' possibility is one I find interesting and surely one which must be relevant to tapering in an appropriate way. I do realise however that it is unlikely I will ever be completely like my 'old' self - after all we are all still ageing while 'progressing' through what are years of a serious AI illness which inhibits lots of activities which may have kept us 'healthier' in other ways. But of course the way we get to the 'end' (hopefully) of all this will have a lot to do with how well we are when we get there - yes even with our 'old' aches and pains and no doubt some interesting new ones !!
I agree with everything you are saying. I was aware of omitting the ravages of age in my post.
I do want to add that I think in some way, PMR has been a wake up call for me with some positive effects. I finally changed my diet and now am 25 pounds less than when I started on Pred. I'm off blood pressure meds. My blood sugar was heading towards prediabetic, but now it is consistently in safe range. Though my joints make more noise than before, I'm more limber. Is that the Pred? Or is that due to the exercises I'm more consistent with now that I really have experienced those use it or lose it moments. It hasn't been an enjoyable journey, and I consider myself to have been very lucky to date.
Every morning, I wake up, stand up, raise my arms as high as they'll go and then bend to reach the floor. If my arms go up without pain and stiffness and if I can reach the floor, I assume I haven't flared during the night. I imagine I'll continue that routine for a long long time.
Today was an unreasonably good day and the wave of weakness didn't hit until 5:30pm instead of 4:00pm. That's probably why I can feel more positive than on some other days. Who knows what tomorrow has in store?
You may be doing slightly too much, but I would suggest that it’s your “normal” aches and pains of life coming back into play. I found my arthritis pains came to the surface whilst I was still in the teens Pred wise.
If you think about it the high doses given for GCA virtually take away every pain, so you get used to being in a painfee zone, which you probably haven’t been since your 30s or 40s (age, not Pred dose!), so when you get down to a more sensible level of Pred, it only works on the inflammation related to your illness and not everything else!
I’m guessing (but can’t say for certain) that those with PMR who start at 15mg don’t get the same 100% pain-free feeling.
Plus of course it’s much easier to reduce when you have oodles of extra Pred sloshing around your body, much more difficult when you get to the stage where only a few mgs make the difference between your inflammation under control or not!
Thanks DL - I knew there HAD to be some benefit for having to take the high GCA Pred dose - and that was obviously to be 'pain free' for a wee while - great while it lasted but I can see a reality check zooming in. And yes I have found that even 0.5mg can make quite a difference at this level - so slowly - very - very is my new 'motto' !
Oh I think we can!!!! Provided we are allowed to stay at the starting dose until everything is a lot better! But I really do think that a single (or maybe 2) infusions of a LOT OF PRED would be a brilliant way to start out the treatment of PMR!!!! I did so much better after having a couple of high dose infusions at a much later stage - and then dropped back to a "normal" dose.
I agree, and that’s why I think the journey with GCA may sometimes be easier than PMR, and, says she crossing all fingers and toes, less likely to return.
I know it does sometimes recur or patients then get PMR, but as you know I’ve always reckoned the really big doses do have more of an affect than just the obvious!
My cousin who was diagnosed with GCA in 2016 is now down to 2mg per day whilst I was diagnosed with pmr in 2013 and have only just been able to reduce to 5mg. Her rheumy always maintains that it’s because she was ‘blasted ‘ with 70 mg pred for around 6 months. When I first had pmr my consultant gave me cortisone injections every 3 months instead of me taking pred. Did me no favours at all. I was in pain most of the time and then after 9 months he put me on 15mg pred. No I am down to 5mg and have been getting headaches and a sore scalp. Very depressing because when I see my consultant on Friday I know he’s going to put me on a massive dose. Funny how things can change from one week to the next. I was quite elated 3 weeks ago when I had reduced to 5!!.
That’s a new approach from your Rheumy, but have to say not a successful one! At least, not for you. Sorry to hear you’re not in a good place at the moment, but as you know no point in taking any risk, do hope you feel better soon.
And yes I agree with your cousin’s Rheumy about the “blasting”!
Alas, old arthritic pains do come back as you lower your dose. Normal for our age group is never going to be “ Spring lamb”. An active life does seem to help though, don’t forget to pace your activities though and punctuate them with rest periods. If painkillers help your pain it does exclude PMR as the culprit. Good luck with your taper,
I think you are probably trying to do too much as well as the aches and pains returning - because after all, maybe some of them were actually due to doing a bit too much? However, to be down to 15mg from a GCA dose in under a year is pretty good going.
I personally would suspect the lower back problem could be myofascial pain syndrome - it often responds well to higher doses of pred and return as you reduce. That is certainly the cause of my aches and pains and when it is dealt with - I get to a lower dose of pred. And lower back problems also can lead to knee problems. So - maybe they are returning signs of something that was there before PMR was identified but it is also a problem that could be solved. In the UK I used chiropractic, Bowen therapy and now therapeutic massage/mobilisation to keep it in check.
As always I appreciate your invaluable comments PMRpro - and 'doing too much' likely was the cause (with age) of many of the 'old' aches and pains. It also doesn't help my partner is very fit indeed and a decade younger than me - even though I don't now even 'pretend' (LOL) to keep up.
I have seen you mention myofascial pain syndrome before so I will have a closer look at that - as the pain is clearly reminiscent of some 'old' (almost if not quite forgotten) ones. Sigh - it was SO nice not to have any aches for nearly a year - it even offset much of the unpleasant Pred stuff - but all 'parties' must end sometime ...
I hear you! I am now in the process of reminding myself every day that I woke up stiff nearly every morning of my adult life. That I never was a very energetic person. That if I feel loads better after taking aspirin for a headache and the other aches also vanish then it's not PMR. I think there is no cure for having achieved my allotted threescore and ten!
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