Entry 12 was written a week after going up to 24mg of methyl prednisolone. It left me feeling much improved in mood and energy levels, and optimistic that we had found a solution to my 3 year history of increasing fatigue, incapacity and daily flushes and shaking. Perhaps, I thought, those symptoms were mainly a simple reflection of my adrenal insufficiency?
Not so fast! A day or two after writing that post, I woke with the familiar trembling and weakness. Since then, it's been rapidly downhill.
The good news is that nausea I used to experience every day seems to have gone (except on waking, when 10mg hydrocortisone seems to resolve it). My CK levels are also back to near-normal. However, the decline in effort capacity continues. A 'good day' counts as one when I can potter around the house without discomfort. But even preparing a cooked meal is beyond me, and a shuffle up the road to the post box - some 50 yards away, is a major expedition.
I've had some excitement with azathioprine too, resulting in two spells in hospital, and a third of overnight vomiting at home. So that's one to cross off the list of potential remedies. Again, there is a plus side - the admission, and rapid re-admission - prompted an emergency referral for a home OT assessment. Within a week, a man came to fit a second stair-rail and I now eagerly await a bath hoist and walking stick!
But treatment-wise, it's back to the drawing board, having had another reminder not to get too smart.