I reduced my pred from 2mg to 1.5mg after 5 weeks of feeling good, a week ago. I had a few withdrawal twinges at first but now I seem to be suffering with heavy legs making walking difficult. No shoulder or groin pain which are my usual symptoms. Does this mean I am having a flare? I emailed the hospital nurses but unfortunately no reply.
As always thanks in advance for any advice.
It could be - or it could be your adrenal glands not keeping up. If it gets worse I'd go back up for a bit before trying again.
That is a big proportional drop - do you drop overnight from all one dose to all the new dose? Or do you use one of our slowed tapers to introduce the new dose slowly?
Thanks. I have always dropped overnight before so haven’t used a slower taper - maybe time to use. I have just heard back from the rheumatology team and been advised to go up to 3mg.
Okay, but for how long and then what? When you started reducing again do use a slower tapering method -they can be found in the FAQs under Tapering Plans
Thanks. The advice was until my appointment on the 13th March which seems a bit longer than I would like.
Yes that best part of a month, so no quick drop back down,….but maybe that’s for best if it is adrenals as well - gives them a bit of time to catch up.
Yes difficult to know - also complicated by having a parathyroid op on the 7th March which I have also asked for advice about from my rheumy with no reply! Think I might just go back to 2mg tomorrow and see how I feel.
Actually think it might be wise to stay at 3mg until after procedure on 7th March….
Oh - is it advisable generally to up your steroid dose before an op? This is one of the questions I asked my rheumy.
Not necessarily to up it -but probably not a good idea to drop it again you have been told up it to 3mg for now.
Thanks.
Not as a general rule - the anaesthetist will provide intra-op cover with hydrocortisone to compensate for the fact your adrenal glands aren't likely to do it for you. Be sure to tell the medical team - especially the anaesthetist! But it is never a good idea to change doses that you know you are good at around the time of any procedure. And it isn't unheard of for the procedure to trigger a bit of a flare.
where can I exactly find tapering plans?
in the FAQs - but have linked them here - healthunlocked.com/pmrgcauk...
I would definitely recommend a slow taper. Numerically, a 0.5 drop is a 25% reduction. That’s 2 1/2 times the recommended decrement.
I’m at a similar stage dropping from 2mg. It took 5Wto go from 2 to 1.75, and I’m approaching the second week of the DorsetLady 5W schedule to reduce to 1.5mg.
Why rush when you’re so close, that’s what I say to myself. I know there’s a desire to get to 0, but one needs to apply the brakes!
It has taken me 3 months to drop from 2 to 1.5mg, but I think I have managed it at last - although I am getting more pain in my hands and wrists than I have had before ; I wonder if this could just be rheumatic pain rather than PMR???
Could well be… at higher doses of Pred it may have been masked… many find that happens.
Heavy limbs 
Severe anxiety resulting in muscle weakness and feeling heavy
Tired heavy eyes
pain in shoulders and legs
