In a quandary.: I was diagnosed with PMR in January... - PMRGCAuk

PMRGCAuk

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In a quandary.

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I was diagnosed with PMR in January of this year and responded immediately to predniselone treatment. Because I had been on Prednisone for two years in 2014 and 2015 for pulmonary fibrosis it was important to reduce to a point where I could stop. I got to 1mg and was due to stop completely when I had a flare up. I tried going back to 5mg for 4 days with no improvement so my GP has put me on 10mg for 5 days. After 3 days I am still no better. Not sure what to do.

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Oldnets
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If what you have really is PMR then you won't get off pred for it quickly - it lasts at least 2 years for 80% of patients with a median duration of 5.9 years and you need pred at some dose or other for the entire time the underlying autoimmune cause is active or the symptoms will return. It may well be that dose is as low as 2 or 3mg, maybe even less - but there are no guarantees. There is no treatment in the sense of cure - just long term management with pred.

It is not unusual for it to be difficult to get things under control again if you allow a flare to happen by reducing too far and the speed you reduced you don't really know at what dose it happened - and it is also possible the underlying disease activity has increased again which would mean you are effectively back at the beginning. I get flares like that every couple of years and have to go back to 15mg to get things under control.

That's about it really - but I don't see what the having been on pred before has to do with anything. I've been on pred for PMR for 9 years. I haven't self-destructed yet. Without pred I can't function - it has been a life-saver.

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