I was diagnosed with PMR in May 2020 and am now weaning from from 4mgs to 3 using the DSNS method. I have experienced pain in my buttocks recently which is how my PMR first presented so I have stopped and gone back to 4mgs.
Today I had a telephone consult with my GP who informed me that working adrenal glands provide the equivalent of 5mgs of Pred so any dose lower than 5mgs should not provide any extra relief from PMR inflammation.
Fortunately he agreed that one treats the patient ,not the text book theories, and advised me to carry on reducing slowly.
Surely the small doses I take now are topping my body up with anti inflammatory mediators. There is absolutely no way I could suddenly stop the steroids now and the pain in my buttocks is 100 % PMR pain which is relieved by the extra 1mg although it takes a couple of days to kick in.
Not everyone has a GP who thinks outside the box so i would welcome comments on this as some may be persuaded to stop steroids too quickly.
One of the most important aspects of living with PMR is too listen to your body and adapt to a slightly gentler lifestyle where possible especially in the first few months.
I took up sewing and have just finished my latest quilt art project which I attach to this post. Its Marloe Sands in Pembrokeshire where we went on a walking holiday this year.
However now, I am almost back to normal activities so there is a light at the end of the tunnel !!!
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larkthebark
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Hello, I don’t quite understand what they mean. Yes, the adrenal glands might be giving you 5mg but if you have PMR pain, the inflammation being produced needs more than just the 5mg of natural cortisol to counter it. Prednisolone is more potent a steroid (x4) than natural cortisol too. Also, they are making the assumption that the adrenal glands are reliably making that amount while you are on Pred. Not everyone’s recover that quickly, mine certainly didn’t. Lucky though they treat the patient!
I agree with Snazzy, I find this mystifying. Apart from anything else, how does the GP know how much cortisol your body is producing? And if you still have pain, that is relieved by pred, then you still need the pred….
Your doctor's theory does seem a bit odd. Your body *may* be producing a normal level of cortisol (apparently mine is, according to a morning cortisol test a few months ago when I was at 5 mg) but that doesn't mean the extra provided by pred is superfluous! Picture a 12 oz coffee mug. That's your PMR pain. Usually you drink 8 oz (that's your own cortisol production) but at the moment you need full 12 oz (the extra 4 oz is your pred).
What was even more concerning was that he tentatively suggested I go back up to 10mgs as 4mgs should be ( in his theory ) ineffective. Thank goodness I have done enough research to know this is not the case, partly because of this valuable site.
He wants to do more bloods in six weeks to check my CRP but I think I may ask for another phone consultation to ask him to explain his theory especially as so far some of you are as mystified as I am .
I like you am slowly reducing and I’m now down to 3 mg pred When I get up I feel the upper arms and shoulders pain a lot until I have my pred then it gets easier after an hour or 2 .
So for me 3mg pred does help 👍
My dr does let me reduce at my pace . I know I’m lucky in that respect . I do have other health issues too but when it comes to the upper arms / shoulder pain , there is no mistaking I need my pred.
Like others not sure where GP has got his views from…certainly not any normal text book! Seems to gave up his wires crossed, so would be interested to know.
Sorry - they are talking rubbish! At 5mg pred the likelihood your body is producing ANY cortisol is quite low and cortisol doesn't have the same antiinflammatory effect as pred. Even 1mg of pred can be enough to manage the PMR inflammation.
Where on earth do they get these ideas? On that argument, no-one would ever need pred to reduce inflammation by suppressing the immune activity.
Thats exactly what I thought but I dont think I want to indulge in a debate about it with him just now.At the end of the day he has given me licence to do whatever I want with my Prednislone and I may revisit his theory with him when I go for my repeat bloods.
Interestingly I arranged the phone consult just to let him know how I was getting on as it had been 8 months since any review.
What concerns me most of all is others may not be as well informed as myself and listen to his advice .
He was suggesting that perhaps going back to 10mgs would be better as a 1mg increase ( with total dose still less than 5mgs) would not work.
Fortunately I held my own and once I had explained that the small increase did control the pain he agreed it was a good plan but it worked against his theory !!!!!!!!
Well at least he believed me when I told him it did but he knows I have an ITU nursing background and we have worked together briefly in the past.Would he have listened and believed someone with less knowledge ?
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