I am reducing pred to 7mg but still have some neck pain. I am keen to reduce the pred but not sure h
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I have reduced pred to 7mg after a few months at 8. I had hoped to be reduced to 3 by now but had a flare up before Christmas so my planned reduction was delayed. I still have some neck and shoulder pain but this is tolerable. Should I be staying at this level for another month? I am having a monthly blood test PSV on Friday - should I also be requesting CRP? My GP says not to bother with CRP but the rheumatologist said I should have CRP too? This is confusing!
0 likes, 12 replies
MrsO-UK_Surrey louisa85653
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louisa85653 MrsO-UK_Surrey
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Thanks for the advice on CRP - I will ask again on Friday....
FlipDover_Aust louisa85653
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The only 'test' is how you feel.
If you are happy to drop, you can try it - you can always go back up to where you last felt ok.
louisa85653 FlipDover_Aust
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sandra28555 louisa85653
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louisa85653 sandra28555
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EileenH louisa85653
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However - if you have returning pain it suggests you are at or close to the long term so-called "maintenance dose". There is no virtue in having pain just to get to a lower dose once you are below 8mg - that is about the same amount of corticosteroid as your body makes anyway so is associated with minimum side effects. Not taking enough leaves unmanaged inflammation in the body which carries risks of its own.
You cannot make a plan that is written in stone: "I had hoped to be reduced to 3 by now but had a flare ..." While the aspiration to reduce must always be there you are NEVER reducing relentlessly to zero in PMR or GCA. You are looking for the lowest dose that provides the same level of relief that you got with the starting dose of 15mg or so in PMR.
And from here on, a month at a new dose is barely enough - your body has to start to make cortisol itself. One estimate for the time it takes your body to settle down to normal production again is 1 month for every month you were on pred - if you have been on it a long time that may seem a bit OTT, but it is certainly true that it can take at least a year to get back to normal even after reaching zero which is why we should still carry a warning card and tell healthcare staff you were on long term pred.
louisa85653 EileenH
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I wish I had come onto this form two and a half years ago when I was first diagnosed! This is all incredibly helpful and realistic.
I started with 15mg two and a half years ago and after some reduction, it was increased to 20 when my rheumatologist suspected vasculitis. Since then it has gone up and down a bit and I have felt quite flummoxed though I have had to delay reductions over the last few months due to a flare up before CHristmas and constant tiredness and some pain when I have been overdoing things a bit.
Trouble is that when I was first diagnosed, I was given a sheet saying how the reduction would work and I had this foolish assumption that things would progress to a complete cure in a couple of years maximum. I am now at the stage of being more satisfied with finding a maintenance level - yes, of course I will always aim for reduction and keeping trying to pace, exercise, eat well etc but life often gets in the way....:-)
FlipDover_Aust louisa85653
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EileenH louisa85653
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You can say that again!!!!!!!
FlipDover_Aust EileenH
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(who presumably took the words from a Reader's Digest article in 1957 - funny the things you know) lol
louisa85653 FlipDover_Aust
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