Wondering if anyone else has had to go above 60 mg to get their symptoms back under control. I was feeling great on 60 for about 8 days, but over the past few my symptoms have been worsening daily. My headache is back on the right side and I'm having left side numbness/pain in my arm and fingers and an odd sensation in my foot on that side.
Short version of my story - GCA suspected by urgent care in October 2019 (my dad has GCA/PMR). I'm 46 and had a sudden onset headache on my right side that spread to temple and jaw and wouldn't go away. I went to an urgent care after a week and they started me on high dose steroids. I've been fighting for a diagnosis ever since. First two rheums didn't think it could be GCA because I'm "too young". Second rheum agreed to treat with steroids at a lower dose. I went up from 20mg to 60mg over the course of two months with symptoms under control for about a week at each level before starting to occur again.
Fast forward, I just saw a new vasculitis doctor this week who 100% believes it is GCA. He is doing a TAB next Friday but I'm very concerned about my symptoms being back on 60mg.
If you've had to go above 60, was 80mg enough or did you have to go higher? Worried now that we aren't going to get it into remission.