Posted , 11 users are following.
i know I have been exasperated, like most of you, with the tapering of the prednisone. Now, 2-1/2 yrs. into PMR I find myself back at 9m for the past month. Question: what if I just stay at 9m, forget the tapering and the flares? Will there be see other signs that I have entered remission, eventually?
1 like, 27 replies
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EileenH kathy67492
Posted
Not really no - the only way you can know is that you can manage without pred and no symptoms return.
Stick at 9mg for now. If you can get to 8mg again - stay there for a few months before trying again. I had a flare in January/February which necessitated a return to 15mg from 5mg. The head of medicine at the local hospital said to get back to 10mg by the summer - done. It would be better if I can get to 8mg - trying that now. VERY slowly. If he's happy with me at 10mg I'm not going to argue.
Lets be clear - it took me over 4 years to get to under 9mg. I'd had PR for 5 years before I got pred at all, for 4 years I stuck at between 9 and 8. Then I was switched to Medrol - even at 20mg I was a wreck. My GP suggested a different not normally available for PMR form of prednisone - and I steadily reduced to 4mg. I don't know if it was coincidence or not - but the time it takes is the time it takes. If your body isn't ready for a lower dose yet it isn't ready and nothing you can do will alter that.
Whatever doctors in the UK and US try to tell you - the average time for PMR to go away for most of us is more like 5 years. Some of us take even longer.
heather39822 EileenH
Posted
Having struggled for seven weeks to reduce to 7.5mg Pred (unfortunately at 2.5mg each week instead of the recommended 10% because of 1mg not being available in Zimbabwe), I just wondered how long you would suggest I stay at 7.5 before considering further reduction?
The good news is that I have just returned from England with a few packets of 1mg tablets so when the time is right I can go down at the correct pace. Having tried to go below this previously (and succeeded only in scuttling back, mortified and dejected, to the relative pain-free security of 10mg) I don't want to err again in foolish haste.
EileenH heather39822
Posted
2.5mg each week? There's no need for that...
You can spread the DSANS approach over double the time, treble the time if need be. Just do each step 3 times. It has worked for people - and you can stop at any point, you don't have to go all the way to the end.
tpaggs heather39822
Posted
heather39822 EileenH
Posted
Not sure if I explained myself. I took eight weeks to drop 2.5mg one day for the whole week - each week dropping another 2.5. Crossing fingers hoping I'm through to my Holy Grail of 7.5. Just wanted advice on how long I should stay put before thinking of (s-l-o-w) reduction to maybe 6.5?
kathy67492 EileenH
Posted
thank you for sharing your personal story, Eileen. It is so helpful.
i hope I have accepted that I am more like you and it will take longer for me to taper...no race to zero. Now I just have to convince my rheumatology of this😊
EileenH heather39822
Posted
I think that is pretty fast - I would do 1mg in about 6 or 7 weeks. If I had to reduce by 2.5mg of the weekly total all at one time I'd do the 1 day with the lower dose at least twice before trying a second day with it. You are getting to every day the new dose in about the same time I do probably - but it feels to me as if isn't as evenly spread and it is two and a half times as big a change.
EileenH kathy67492
Posted