Advice on tapering

[Lclmlbls]

I started 15mg of pred on 15 Feb and felt 95% better by 20 Feb. Saw the doctor on 21 Feb who offered to drop the dose to 12.5. As I still had very slight shoulder pain she booked an X-ray to rule out rotator cuff problems (a scan is a 4 month wait). I didn’t want a relapse so she agreed to keep to 15mg and review at my telephone appointment on 28th Feb. I’ve had chance to get the X-ray yet but generally the should discomfort is only slight.

I’ve seen the NICE guidelines for tapering which doesn’t match reducing after a week.

I’m not sure if or for how long I should stay on 15mg? Obviously I want to stop pred as soon as possible. Any advice would be welcome.

Another question - after 3 weeks of taking pred, the adrenal gland stops working - what effect will this have?

[Lclmlbls]

sorry that should have said NOT had chance to get my X-ray

[DorsetLady PMRGCAuk volunteer]

hi,

Most guidelines say 3-4 weeks from starting initial dose, but personally think nearer 4-6 is much more sensible…

and don’t be rushed into tapering too quickly or in too bit a step… the guidelines are rather optimistic about that as well.

As for your comments, everyone wants to stop Pred as soon as they can but sorry that’s not how it works, as it says in my intro/info post, PMR is a self limiting condition, so it makes the rules…. as to when it goes into remission. No point in trying to get off Pred before that happens.

Think I sent this before, but do have another read through it, now you have got your head around the whole think a bit more-

healthunlocked.com/pmrgcauk...

And also see this re adrenals…you really don’t need to be worrying about them for a while, the steroids will be doing their job for them for some time -

healthunlocked.com/pmrgcauk...

An x-ray will show if you have osteoarthritis in your shoulder, but not necessarily if the rotator cuff has a tear, that need a scan.

[PMRpro Ambassador]

"I want to stop pred as soon as possible"

Everyone does but it doesn't work like that. PMR is a chronic disease and as long as the underlying autoimmune cause of the inflammation is active you will need some pred. It may be burned out in a year or two or it may last 5 or 6 years or anything inbetween. And for a few of us it can be much longer. There is no way to identify which is which in advance. But it is NOT a disorder for which you take a course of pred and then taper off - you are tapering off to find the lowest dose that works as well as the starting dose achieved, preferably after 4 to 6 weeks to give a good clear out of accumulated inflammation so all you are dealing with the new daily dose which is created every morning about 4,30am. There are no shortcuts and no magic potions to speed it up or replace pred.

There is a trend again to rush the patient off the pred at the start - and we think it just creates problems. Start by getting rid of all the symptoms you can at a moderate dose, 15-20mg and then taper SLOWLY, watching for any return of the symptoms and allowing time at each new dose to be sure it is still enough. Disease activity is higher early on in the journey and you will need more pred than you will later. Be patient - because if you rush, you will relapse, need more pred to get things under control again and the more you do that, the harder it gets. Once you get to 10mg, 1mg a month is more than enough - any faster is said to be predictive of flares. Most flares are due to going to too low a dose of pred and avoiding that is a good thing in the long term.

[christi48 in reply to PMRpro]

So helpful!