I have a bit of a background in industrial processes. One of the early lessons is about variation. Everything has natural variation. It goes up and down. But generally, on average, its stable. Even measuring the same thing many times gives different results. But, on average, we get a kg of butter every time. Then things go wrong, the measurements are out of whack. Either a step change or a one off or increased variation, or a trend up/down.
With my hypothyroidism my thyroid began to produce less than asked for. I knew because my energy levels were so low something had to be wrong. Take the same amount of thyroxine (the right handed version but it makes no difference) every day, my energy levels return to normal, the TSH in my blood returns to normal. I'm stable. Nice, because the first step in fixing an industrial process is always to get back to stable. Lucky with thyroid because the natural variation is pretty much the same now as before the problem arose. And no side effects.
With PMR and Pred there seems to be much more natural variation. I'm stable, on average. But day to day I'm a bit up and down. Much more so than pre-PMR. I can't do anything about that. Manage my day around it.
I take the same amount of pred every day at the same time, with the same amount of yoghurt, using the same spoon, so it must be something else that causes the variation in stiffness, pain and energy. Probably the PMR. And its not only variation in the symptoms I had yesterday, its occasionally new and scary things. But generally, on average, they get worse and better, up and down, arrive and go away.
There is light at the end of the tunnel though. There's a trend. Slowly and inexorably over a long period the symptoms subside a bit and I can reduce the pred. A trend that is there in the long term but masked by the much greater daily up and down variation. So the trick is to reduce the pred as the symptoms allow, not reducing too fast so stability is lost.
A flare is "just" a loss of stability. A step change. So we take some remedial action. Maybe more pred for a time. With the aim of getting back to stable. First stable, then reduce the pred.
Changing anything in a process has flow on effects. If a process is stable then the preferred approach is to change only one thing at a time and observe. If its unstable then first stabilise. Its also typically an exercise in frustration trying to improve an unstable process. First make it stable, then reduce the variation, then improve it.
The hard part in PMR seems to be the diagnosis. There I've been lucky. Three (Aus) GPs, two who I know well, all happy with the diagnosis, not a Rheumy in sight, and all happy with the not very prescriptive "reduce the pred slowly". A pleasure when one of them said "its your disease". Though I'm reasonably certain they don't perceive me as an industrial process! Part of the luck was perhaps a sense of how Doctors diagnose and the information they need.
Nothing new in the above, just another way of looking at the journey.
Basically though, I'm lazy. I have a few well worn, well tried, universally applicable concepts. Patterns if you like. I often here "the devil is in the detail" but rarely do I hear the (for me) important "the answer is in the concept". Just some of my two bits about being holistic.
