PMR, Prednisone

As long as you are taking enough pred, the symptoms should be managed. But that is all that is happening - the underlying disease is still there, active in the background. It isn't altered at all by the pred.

I think - though there is no proof I can find, I doubt it has been studied and I can't think of any way you could measure it - that the autoimmune part of the disease varies over time. A bit like the temperature graphs you see on weather forecasts. During the night the temperature falls and then rises again the next day, falls again overnight, rises again. But often not down or up to the same level as in the day or week before. In a similar way, the activity of the autoimmune response that makes the immune system attack your body by mistake changes, not necessarily from day to day but over time. When it is relatively inactive you feel better, you are able to do a bit more and you are able to get a little bit fitter - and that also has an influence on the PMR. Exercise can have a general antiinflammatory effect - just if you do too much in PMR it makes your muscles hurt. 

I suppose it depends what "am I getting better" means. In some ways yes - and when you are doing better you will be able to manage on a lower dose of pred and will be able to reduce the dose without any difficulty. But don't be misled - one lady said she got up one day and "felt different" and was able to walk and do things she hadn't been able to for a long time. She didn't really change her reduction pattern but it never had a hiccup and she stopped pred the following New Year. She was fine for several months - but slowly the stiffness and pain returned and her rheumatologist confirmed her suspicions: the PMR was back. She only started on 10mg this time, that was plenty and she is back down to 7.5mg after a couple of months. She is feeling well and says she isn't as worried about being on pred this time round. She is enjoying feeling "well", even if it is with pred.

Yes, I think you do start to feel better at some point - maybe it is the autoimmune bit is less active so you are less tired. Weather can have a great effect - so the time of year can change how you feel. Maybe you have learnt how to manage things better and your body is thanking you.

You are at the stage where your body has to start making cortisol, the body's natural corticosteroid, again so the slow reduction is still important - the slow approach there gives your body a chance to catch up in that respect. I got down to 4mg last early spring and was fine, tried 3.5mg and wasn't - but we were going to China for a meeting and holiday and I found I felt MUCH better at 5mg and when I tried to go back down after we came hme I got stuck again at 3.5mg. Not PMR, just fatigue, so I went back to 5mg again. I've just had an infection, it's triggered a bit of a flare. At 7mg for a few days I felt really good again, I tried 5mg last night - not sure at all, we'll see.

So to answer your final question - it can be either: either the underlying cause becomes more active and you need a bit more pred to keep the symptoms at bay, or you reduce too much and the pred is no longer enough to manage the inflammation. 

So keep reducing - and fingers crossed it is that the autoimmune bit is burning out!

I think your questions are good ones also Paul's wonderings......How are we supposed to know when the PMR is diminishing.....gone.  i have been on Prednisone over 2 years and although it treated fairly classic (if there is such a thing) sx of PMR beautifully, I developed Avascular Necrosis, maybe maybe not from Prednisone but I have had two total hip replacements since Dec 1 and you'd better believe I want off this medication unless I absolutely need to be on it as AVN can also attack other joints!  I feel asymptomatic as to PMR. I take 3 mg qd, down via 3.5 from 4.0 in November. I see my rheumatologist tomorrow. What questions should I be asking him? (He totally missed the AVN development). At this point, in my own thinking, I am going to stay at 3 mg for a bit and slip down to 2.5 and see what happens. I believe sed rate is fairly useless here?

One other thing. When the surgeon did my hips there was a ton of inflammation in both joints. One wonders if the Pred is really helping then anyway. I am confused but want to make the best choices for this poor body. She has been through a lot!