Morning everyone. I reduced pred a week ago from 5mg to 4.5mg I am suffering severe burning pain in my shoulders again. Should I work through it or do I need to go back up again .
I love this site for all the informative and caring posts I have read, please can some one help me. Many thanks mandy
If it were me, I'd be going up again without hesitation, but I suspect that the giant drop of 0.5mg is the culprit. You would need to raise the dose to clear that inflammation before dropping again - but dropping again gently next time. 7.5/5mg is always a critical level as you are asking your adrenal system to wake up and do some work and it doesn't want to.
There are details of slow reduction plans on here and they do seem to work for most.
Thanks for your reply av been in agony and not sleeping which doesn't help.anything thanks again
When did the pain return? Was it there immediately you reduced or has it taken a few days to appear? And is it now getting worse day on day? If the latter is the case then it is a sign that you are no longer taking enough to manage the daily new dose of cytokines that the body sheds in the early morning.
The ideal is you clear out all the built-up inflammation with the starting dose and then seek the lowest dose that stops it building up again. If you are now not doing that then the inflammation will build up slowly until it reaches the threshold at which you have symptoms again. If 5mg is what you need - that is what you need. Ignoring increasing symptoms won't allow you to "work through it", it is the way to allow an established flare due to an inadequate dose, the most common cause of a flare.
Five mg is a very low dose with genrally very small risks of side effects - and one top PMR expert in the UK likes to keep his patients there for several months before continuing the reduction. It seems to make the subsequent reduction easier.
Thanks for your reply. My doc keeps telling me I need to get off the pred, so have been trying to " get over it" but I'm not sure I can live with it much longer x will take your advice and thanks once again
Which doc? Your GP? It isn't his pain - and it is thoughtless and unrealistic to tell a patient they "need" to get off the one medication that makes life worth living. There isn't a lot of choice - and if I had to remain at 5mg for the rest of my life I wouldn't worry about it. I had 5 years of unmedicated PMR - if I had to return to that because a GP (or rheumy) insisted I had to stop, they'd have to prescribe a load of antidepressants or risk me topping myself. I was cut off from normal life - couldn't get out and do things with friends and struggled to even toilet myself. Ask your doc if he wants to condemn you to that.
Hi Mandmellons,
There is no virtue or merit in "working through" the severe pain you describe. In fact the inflammation maybe causing you harm. 5mg is a small dose anyway and if you were comfortable on that, I would return to it and stay there for a while. Some people need a maintenance dose of 5 mg forever because their own Adrenal system has ceased to work efficiently. Any side effects should be minimal. Well done for getting down to 5mg, don't spoil the ship for a hap'eth of tar.
Polkadotcom mentioned slow reduction plans. Here is one:
As others have said, depends when pain started, can you work out if it was steroid withdrawal or a flare. If you're not sure then go back up to 5mg if you felt okay at that level.
Stay there for a month just to make sure things are under control, then try again - using a slow plan - they really do work! 0.5mg may not sound much, but in an overnight drop your body notices, so you have to be canny and fool it into not noticing a reduction.
Plus as you get lower, each reduction gets bigger in percentage terms so it's bound to be more difficult. I think sometimes we forget that and think it's going to be easy sailing - and it isn't always.
As Jane said - don't spoil it now by rushing.
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