I know I had had PMR for 5 years before it hit like a ton of bricks - but it was never so bad it stopped me altogether. I'd given up aerobic classes and step - I struggled to get up onto the step because my thighs just felt weak. Then I could do less and less of other stuff. And the fatigue - the mind numbing "I just want to SLEEP" in the afternoons.
Yes - when you have PMR you have to learn to manage your spoons!!!! Google the spoons theory by Christina Meriando!
The buffalo hump and chubby hamster cheeks - yup! All familiar I'm afraid. But they do go away again once the dose is lower and you are more active - because some of it is the lack of exercise that is forced on us. Restricting carbs helps while you are still on pred though, many people find it helps the cravings and hunger pangs and does help with the general weight gain.
Have you seen the most recent reduction scheme I posted? You just creep down on a continuous basis, 1mg a month about:
"My reductions are VERY slow. I use the following pattern to reduce each 1mg:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.
This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis."