Hi, been on 1 mg for over a year and was then told to finish taking them . Seemed okay for a couple of months but due to a flair GP put me back up to 5mg. What's the best way to taper back to 1mg. Think it's going to have to be a permanent arrangement.
Thx
It's very common - I take it you stopped and a couple of months later it was back? I'd take the 5mg for up to a couple of weeks and drop straight back to 2mg before aiming for 1mg. And ignore any encouragement to try the experiment again!
Thx advice I will take. It was my GP who decided to take me off Pred. It's about time they were given training on PMR and GCA. Told him he should check this site out. Didn't go down too well.
Plenty who think the same - that 1mg is such a low dose it can't be doing anything. WRONG!!!!!
Your response is very interesting for me to read today as I had a full relapse 5 days ago after 20 months off the preds. I have self medicated on 5mg per day and can now move all limbs normally (having not been able to stand 5 days ago). Doctor advised me to stop completely after 7 days and see what happens! I don't think this is good advice having gone right through the mill once and come out the other side. Hoping for a 'Happy Christmas'
Nice person - relapses in PMR are not uncommon - the tendency to develop an autoimmune disorder never goes away, it goes into remission and can wake up any time with the right trigger. The risk you have with just stopping is that when it reappears it will be harder to control. They should be treading lightly ...
Definitely not good advice. They are G P's not PMR experts which many of the people, especially the PMRpros and many of the regular contributers are. I was prescribed physiotherapy for nearly a years until someone realised it was PMR and that was not a GP.
Agree with PMRpro
Hi DL, think I've now realised it's a condition for life and am going to accept that. Just sometimes difficult to differentiate from old age musculo-skeletal problems. Not too bad at present, did over 30000 steps around Liverpool over 2 days and that did my knee no good at all but was worthwhile. GP wants me to have replacement but no way while I'm still active.
Agree you should use knee whilst you can - but sometimes it’s inevitable. I had replacement in 2018 -have to say brilliant outcome……I have lumbar spondylitis-not severe- but that impacts on too much walking..,as they say “old age isn’t for sissies “
Nice to hear about the knee. Always seem to hear negative things about new joints.
Had mine in 1999, a brilliant move and gave me back a normal life. It's still going strong. Would recommend it everytime.
Being greedy I have 3, knee, hip,and shoulder…..all good in themselves although the rotator cuff in shoulder is a bit weak (long term issue) - but most important - no more pain!
But you have to put in the hard yards before and certainly after surgery and hope for the best…
i took a year to go from 1mg to zero via 1/2 then 1/4.
me too! - and at the end every other day!
Did you go down from 1 to zero in one go? Dancersize2 has a good idea, once you are back well stabilised on one.
From 5mg of pred to 40mg 🙄
Should I go back up to 10mg preds from 9?
Back up to 15mgs of pred AGAIN!
One week later, Pred back up. 
