First, let me say that this site and all that have responded to my woes, have helped me tremendously through my PMR for the past 7 years. I have been tapering from 8mgs of prednisone and am now down to 3mgs over the past year. It has been a very slow process and I have been tapering by 1/2mg every 4-5 weeks. Does this sound normal? Have other patients had similar difficulties tapering down to zero? What is the average amount of time that those that have PMR are still on prednisone? Are any patients on higher doses of prednisone for longer that 7 years?
I'm sorry, but I am so frustrated! I have been on 3mg for the past 3 weeks and I can hardly walk, let alone bend and get up. I have been pushing myself in hopes of forcing my adrenals to catch up, but this is just too difficult to continue. This has been a continuous journey from 15mgs at the start to 3mgs and below for the past 7 years, only to jump back up again and start all over.
Should I jump up to 5,8,10mgs again? Thank you again for all of your support!🙃
Written by
RaisinBran
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And honestly there is no point in trying to force adrenals - they will start to work when they are ready -have you have a cortisol test to see if they are able to. In some cases they don’t, so if you find yourself in that situation you will be on another form of steroids to help.
But worry about that on another day, for now get the flare sorted.
It is clear that 3mg is too low a dose to manage YOUR PMR inflammation at present. Below 5mg you have 2 factors to balance: above all, you need the dose that manages YOUR PMR if it is still active, and I would say it obviously is. But alongside that, you are wanting, hoping, to be low enough to encourage your adrenal glands to start to wake up and smell the coffee. But that is really a seocndary consideration, On top of that, I hate to appear to be ageist, but as we get older, things get a bit worn out, and that means the HPA axis, the control system behind the adrenals, is also a bit wobblier and may not be able to leap out of bed as it would have a few years earlier.
And my perennial cry: you are NOT reducing relentlessly to zero pred. You are titrating the dose to identify the LOWEST EFFECTIVE DOSE. For you currently that is obviously 3,5/4mg, Any less and the inflammation builds up again until you have symptoms. Pred isn't a cure, it is a management strategy and management strategies have to be employed in full to work, try to make cuts and it will go wrong.
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