Ok here's the story, got down to 13mg of preds and felt rotten. I was also on 2gm of Mycophenalate. Felt like crap so spoke with doc who advised to up the steroids again to 20mg. Did that and started to feel a bit better. Still had stomach pains and headaches and decided that if I had upped my steroids there was no point taking steroid sparing Mycophenolate, so stopped taking it. I did write to my Rheumy who was on holiday but he did come back a few days later saying to stop. I stopped before I heard back from him as I was going on holiday to Madeira. Had 11 days away, the first ; I was not too good and spent two mornings in bed.
Now got back to the UK after having our flight cancelled on Monday, so two extra days in funchal. I feel so much better now and even recovered well after being kept up to 3am sorting out hotels and flights due to the cancellation. I will miss my appointment with the Rheumy tomorrow as we could only fly back to Edinburgh and our car is in Bristol! Another night in a hotel and an early flight tomorrow. I have managed to re-book my appointment for the 4th of June 😀. Can't see him next week as I have to travel to Marseille for work. Don't think I would have managed all this without upping the preds, but now need to work out next steps.
Don't really want any more drugs but know I need to get the steroid dose down. Guess some serious questioning with Rheumy is in order.