I have had PMR since November 2018 and had been on 5mg Pred for three weeks when the telltale pains in shoulder and neck returned. Was deciding whether to bother GP when last Saturday had a visual disturbance followed by what I thought was a migraine but it was only painful on the left hand side of my face. Sunday I just felt shattered but had pain in my left jaw joint. Monday and the pain the jaw was still there and the headache and then I was getting visual disturbances every 10 mins or so. I suspected GCA and immediately telephoned GP who confirmed and sent me down to our local A&E. Long couple of days short, I have had GCA confirmed just on symptoms, tenderness on temples and 60mg of Pred I was described on Monday having reduced symptoms by half. Thankfully no damage to eyes. I have been given 60mg Pred for 2 weeks and then 40mg plus stomach and bone protecting tablets. My blood inflammation indicators do not show any rise but I understand that can happen.
There is talk of me having a temporal artery biopsy which from what was explained to me yesterday does not seem to add anything that outweighs the cons of what can go wrong also because of the current situation it goes on the emergency op list which to me should be for more life threatening traumas etc. I understand that there is now an alternative scan and indeed the rhuemy yesterday was talking about a whole body scan to see if any other damage had been done. What have other people experienced re biopsy v scan on the NHS?
Sorry a couple of more questions for you lovely people.
How long were you on high does of pred for GCA?
Does GCA come back? or is it simply a complication of PMR which goes as PMR burns out?
As the days go on I may have more but do not want to bombard them with you now.