PRED AGAIN

[deeperpurple]

not posted for a while i came off pred at the doctors advise 1 mg a month eh ho back on 7mg a day to function again was like starting over .again doctor wanted me on 15 a day but i refused been on them 3 years now soon as I get a good blood test i will be tapering at 1/2 mg per month

[PMRpro Ambassador]

Hi - bad luck, you are one of a few recently for whom 1mg was probably what they needed, zero didn't work.

Is the 7mg working to get the accumulated inflammation out of the way? Might be worth doing a few days each of 15mg, 10mg, 5mg and if that all works as I would hope, you could then try a bit less ongoing and taper very slowly back to 1mg which was presumably enough before. How long were you at 1mg before stopping? We think that last 1mg should be tapered to 1/2 and then zero using those as the new doses and taking at least 2 months over each. Though personally, if I was fine at 1mg, I'd stick!!!

[deeperpurple in reply to PMRpro]

Doctors wanted me to taper at 1mg a month and it should of been 1/2 mg per month I did it then came off pred then every thing came back I tapered to quick 7 mg has got me feeling OK again I'm having bloods done next week so fingers crossed should be OK

[DorsetLady PMRGCAuk volunteer in reply to deeperpurple]

As you were diagnosed less that 3 years ago think your GP was a tad over optimistic -and in hindsight below 7 or 8mg (definitely 5mg) only 0.5mg a time.. so this time around I’d suggest you stick to that -and also advise GP that’s your plan…

[PMRpro Ambassador in reply to deeperpurple]

It doesn't make much difference how fast a taper is within reason - what matters is whether the underlying autoimmune disorder that causes the inflammation is still active or not. Many doctors believe that PMR only lasts for 2 years and then it magically disappears - so the patient no longer needs pred to manage the inflammation. But it doesn't: about half of patients take up to nearly 6 years to get off pred, the rest take longer, Only about a third actually get off pred in two years, many of them go on to relapse.

Pred does nothing to that underlying disease, all it does is manage the effects of the inflammation. As long as that is active, you need pred. You are never reducing relentlessly to zero as too many doctors think. You are tapering the dose of pred in a process called titration to find the lowest effective dose which is a very different thing. And to identify that you need to go more slowly and stay at any new dose for a few weeks to see if it is still enough. When symptoms start to reappear you immediately stop reducing and go back to the last dose that worked as well as the starting dose did. You wait a bit and then try 1/2mg at a time - if it works you do the same again. But if you have symptoms - never reduce any further straight away.