I have just joined healthunlocked and recognise the comments from others, especiallyregarding the ups and downs of prednisolone.
I was diagnosed with GCA in September 2014 with an ESR reading of 147 and started on 50mgs of prednisolone. It was an instant "cure". I came down to 6mgs by September 2015 and that's when GCA came back painfully. My GP and I agreed to we had come down too quickly, so I went back up to 30mgs. I recently reached 12mgs, but as my ESR reading started to move upwards (from 2 to 8, a long way from my initial 147!) I'm now on 13mgs and will keep ticking over on that until my next blood test in January. Will I ever be free? Only time will tell.
Before I contracted GCA I'd never heard of it. I go now to London SupportGroup meetings and it's a bit of a relief to know that I am not alone and to share information with others. I'd like to start a meet up group locally - I live near Epping in Essex. If you are interested please let me know.
That's all for now. I'm looking forward to reading other's comments and joining in where I can Best Wishes to all