After 2+ years of GCA I'm still yo - yoing my pred dose trying to control symptoms (temple and jaw pain, eye pain and disturbances). Apart from one flare last year, my esr and crp levels are always normal, and whenever I see my rheumatologist he just seems to dismiss my symptoms and reduces my pred dose.
At my last meeting with him he was visibly annoyed with me for increasing my pred dose without referring to him (I was out of the country at the time), despite me experiencing quite severe eye problems.
The fact is that I just I can't get hold of him, or indeed anyone, in the case of a spike in symptoms to get advice. His secretary won't return my calls - she has a standard answerphone message which refers callers to a "rheumatology helpline" which is only open for 2 hours on 2 mornings per week. I've phoned this on several occasions, and left messages. A nurse did phone me back, and when I explained I wanted urgent advice given my symptoms, she said she couldn't give advice and would try and get hold of my consultant. 2 days later she phoned me back, telling me to increase my pred dose, which seemed to help.
I went to A&E last month after phoning 111 and speaking to a doctor. At A&E they increased my pred dose (to 30 mg) after taking bloods (which again were normal).
I'm not sure what to do next - I am still experiencing the same symptoms which come and go on a daily basis. I'm really reluctant to increase my dose any further because I'm having treatment for pred side effects (acute angle glaucoma and cataracts). I have an appointment with my GP but not for another 2 weeks (she's booking 1 month ahead at the moment), but I would like to discuss being referred to another consultant if possible.
Can anyone recommend another consultant within driving distance of Milton Keynes?
Apologies for the long post and thanks in advance.