Posted , 13 users are following.
ive seen it a thousand times but cant find it; an acquaintance of mine who has had pmr for 15 years and is currently on 1/2 mg. (she says forever which is pretty darn good) asked me about the relapse rate after discontinuing pred but i cant find it. thanks.
0 likes, 5 replies
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Danrower Twopies
Posted
I think our autoimmune inclinations are with us to the end. I've had 2 severe bouts of PMR twice, went into remission twice after 1.5 years each. I have very very mild symptoms now, on 2 mg. pred a day.
But we're all different. We just attend the same school.
Good luck.
Dan
Twopies Danrower
Posted
thanks! glad youre doing ok now. i should have been more specific in my question--im looking for the stats regarding relapse in relation to the time on pred. seems like its almost 50% for those on pred for 1year and then decreases as the number of years increase.
i think youre right about it being with us to the end. im just now tapering to 5; started pred 2 1/3 years ago--but whos counting? will stay at 5 for several months once i get there.
EileenH Twopies
Posted
Honestly don't think there are figures to be found. I've not seen any.
Twopies EileenH
Posted
im using the wrong word, per usual. maybe its recidivism? return of pmr? i seem to recall that for those who get off pred in one year, the return of pmr is something like 49%? for those on pred for 2 years, the relapse rate is lower and so on.
EileenH Twopies
Posted
I know I have said that people who get off in a year or so are at a higher risk of relapsing (who cares what word, the doctors can't agree on the difference between a flare and a relapse) but I have never seen any numbers and to be honest I doubt they could be accurate anyway. How do you differentiate between the persons who stop pred and the symptoms appear a few weeks, a few months or a few years later? Or who can stick at 1mg/day for yonks and are fine but it all comes back later without changing dose?