(I originally posted this as a further comment on an older post and then it occurred to me that I should post it as new so apologies if the duplication is irritating.)
Well here I am again... having made absolutely no progress and feeling the worst that I've felt since the outset of this horrible episode. Since I last posted I still haven't felt well enough to do anything at all and now I've also run out of things to research. With all the variables re. uncertain diagnosis, continuing symptoms, different types of steroids, possible failure to absorb them properly, etc. etc. it's just too complicated. Add to the mix the continued failure of my normally excellent rheumatologist to respond to any of my queries and a GP who doesn't want to get involved and really... I'm at my wits' end.
Having been on the reduced dose of Prednisolone (35mg) for 2 weeks, I organised another blood test - ESR 13, CRP 0.7 so on Friday, I reduced the dose to 30mg as instructed. Woke up the next morning feeling absolutely terrible. Head was spinning, vision blurred, weak and shaking all over, nausea, and the worst thing was severe sciatic-type pain in my lower back which made it almost impossible to walk. Also, I'm getting bouts of uncontrollable sobbing now, which I could really do without!
As this happened the day after reducing I suspect it might have something to do with that but once again, dramatic symptoms without understanding what's causing them. As the cupboard was bare, I struggled out for a quick trip to Tesco last night but that made me feel so dreadful, I've been laying down ever since. Does anyone have experience of such things happening when reducing Pred?
I definitely need to see a rheumatologist, and quickly now, so have made an appointment with somebody completely random, just on the basis that he could see me tomorrow. Now I'm struggling to peer through my excessively dry and blurred eyes to produce a 'potted history' of this saga to present him with, poor man.