Just joined the group (male, 62) and so very nice to know I am not alone in this 'challenge'. My heart goes out to those who have been coping with this for a long time.
I self-diagnosed (Saga mag article) after 8 weeks of pain/debility, doctor wasn't convinced but put me on 20mg pred (seems low??) which kicked in after a week, had 2 good weeks and improved inflamatories, but relapse week 4 (last week - after flu jab??) so doc has said I can go up to 30 - or even 40 if not improving.
So, any general advice from you wise and experienced ones is always welcome (e.g. lots of tingling at the moment - is that a warning of possible complications coming or just returning feelings from inflamed bits?).