I have just found this site and GPs, rhumies etc should tell anyone with this illness about it.
A wonderful A&E cdoctor knew the symptoms and directed me to my GP the following day...this was in March last year. She sensibly prescribed not the recommended dose of pred (60mg) but 30 mg which has helped reduction over time although I have had one relapse. I have reduced the dose by 2 1/2 mgs per month until I reached 12 1/2. I am now on 9 mgs a day and will try reducing either by 1 or 1/2 every six weeks. Is this wise?
i started to lose hair at one point but, thankfully, that has stopped.
As one person mentioned, the doctors seem to have little idea of the disease and are keen for us to reduce meds asap. Each person is individual and my GP has left it up to me! Can anyone let me know how often they have bloods/blood pressure/ any other scans etc or even if they do?