I have been on prednisolone now for 10 years, (PMR and GCA) and over the past 4 years or so repeatedly tried to reduce down from 5mg.
Unsuccessfully.
I was down to 2mgs last year, felt awful and my ESA was up from 20 to 36, the Rheumatology nurse said to go back up to 5mg and probably accept to stay there long term. She explained that my body, after 10 years, could not cope without steroids, and it was a better quality of life to stay on 5mg that feel awful.
My concern is this, if in the future I need surgery for anything will this complicate things? My GP wasn't too happy but did say it would probably not do me any damage.
Any thoughts or experience of this would be much appreciated.
Best wishes
Written by
lesley2015
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If 5mg gives you good QOL and both Rheumy dept and GP [albeit begrudgingly]… don’t have problem, then why would you.
You may find in future you can reduce to a slightly lower dose, but for now just go with it - and have a better life.. being in constant pain is very debilitating both mentally and physically.
There are millions of people in the world who are on life-time pred for their illnesses. A dose of 5mg is about the same as your adrenal glands produce in the form of cortisol - the corticosteroid is essential to life. While you are on that sort of dose of pred, your body doesn't produce much, if any, cortisol, the pred does the job. In the even of extra stress, you may need some more steroid in line with the Sick Day Rules. Should you need surgery, the anaesthetist will deal with that. There are surgeons who would prefer their patients not to be on pred but they all accept that needs must.
You obviously have a very sensible rheumy nurse - hang on to her!!
Hi.I am in a similar position to you, though did not have GCA, having had PMR for just over 10 years now and the lowest I ever got by December was 2mgs, with several flares along the way.
I am now back at 8 having had a huge flare back in December leaving me in agony..( probably the worst episode actually)
My rheumy always says that " if you had to stay on 5 for life it wouldn't be the end of the world "
Despite this I was always trying to reduce but now the likelihood is that once I get to 5, the lowest I have ever been ok at I am sticking there for the foreseeable.
I have also had surgery 2 years ago and told the anaesthetist re pred and they gave me extra steroids during the surgery and all was good.
As PMR Pro and Dorset Lady both say QOL is key! I have been very slow to realise but time spent in agony isnt worth living far better less time and pain free because that PMR pain is worse than any other pain I have had tbh!
It may not be a 10 on the pain scale - but it is the fact it is always there and affects everything you do isn't it?
One of the rheumies at my hospital was doing a study about why the patient's pre-appointment assessment of their PMR disease activity almost never matched their clinical examination assessment. I spent quite a while trying to explain to him that you don't often get painful joints in PMR - and they use the same examination technique as they use for inflammatory arthritis patients. That results in a lower disease activity score - and it doesn;t take into account that a constant score of 3- 4 may not sound much but when it is there every day and nothing really gets it out of the way it simply saps your resistance.
Yes that's it exactly!If the pain isnt controlled it is in every single movement and it's such a hard pain to explain to those that havent fortunately experienced PMR as completely different to the pain you get when you have over done it on the exercise front!
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