A couple of weeks ago I was getting GCA symptoms back. So Rhumy put steroids back up to 30mgs. My CPr readings had rose from 1.8 to 16.5 (no where near the 184 when diagnosed in May 18). So I was quite happy but disappointed steroid was put up. Things really did not improve much so I bucked up courage and rang help line again as didn't want to cry wolf. Glad I did. He pulled me in immediately. Put me up to 40mgs steroid and put me on some chemotherapy drug called meta something or other to further suppress immune system. I had complained of fuzziness in left eye and he also managed to get me into eye clinic that afternoon
After lots of tests it seems my optic artery is inflamed putting pressure on optic nerve. I have some pressure in eyeballs that can turn to glaucoma if left untreated. Eye Consultant concurred med change correct course. Need to go for CT scan to make sure nothing sinister going on. Also have pressure in my head and blood pressure slightly raised. This was all very disconcerting but I am so glad I did the right thing. I am beginning to realise how evil this disease can be and is not to be messed with. I think I have reached the moment of acceptance but GCA will not overwhelm me.