It's been an interesting few weeks since I last posted.
To recap, I was diagnosed with pmr several years ago, gca a year ago. On the advice of the doctor, I was trying to reduce the steroids down from 60mg after another gca flare up (taken for three weeks. My normal dose being 15mg prior to flare up. ) and basically I came down too fast, then with the advice from this forum started to reduce more slowly. Was still in considerable pain, but able to cope. Thank you.
I went to see Prof. Dasgupta who quickly diagnosed that along with the pmr & gca I had now developed steroid myopathy. Great ! At least I now know that the extra weight wasn't all my fault. Anyway, I need to reduce the prednisolone because my muscle is being replaced by fat, and fat wont hold me up! Knowing just how much pain and immobility I have without the steroid, Prof. D has prescribed a pain block drug which I haven't had through yet. At present I have to walk with a stick and unable to get up stairs or walk any distance so I am quite concerned how I will manage. But as with everything else I will cross that bridge as & when I need to.
In the meantime I saw my retinal consultant who urgently wants a temporal biopsy. I am not keen because I have had a brain haemorrhage and have hydrocephalus and any trauma to my head sets me back neurologically which I do not need at the moment.
So, I went back to Prof. Dasgupta yesterday and had a temporal artery ultra sound scan, which shows NO giant cell arteritis! Phew, am I glad I went to see him again.
But now I have a mystery, can anyone throw any light on why, for over a year everyone has told me it was GCA and why it responded immediately to being hit with 60 mg prednisolone? my sight came back within half an hour. If it wasn't giant cell arteritis what on earth is mimicking it?
Anyway, as always, thanks for all the helpful and constructive advice this site is invaluable.