Hi friends, since my last post about 2 months ago when I mentioned that my rhuemy wanted me to have my aorta scanned to check on giant cells ( my CRP &ESR had been creeping up) before deciding the next step with my pred dose. I had a CT scan on 30th October the conclusion of which was stated as: subtle thickening of the ascending aorta and juxtarenal aorta. I do not think the appearances are enough to make a confident diagnosis of large vessel vasculitis though this remains a possibility. PET may help depending on the current degree of immunosuppression. I was then sent off for a PETCT scan 20 days later and received this from my rhuemy today: PET scan clearly shows you have an inflammatory process affecting the large vessels. This can occur with giant cell arteritis. Treatment of choice is prednisolone and methotrexate. Your most recent inflammatory markers revealed CRP 8.2 ESR 40 which suggests the inflammatory response. Is still raised.
To dampen down the inflammation I suggest you increase the preds to 40mg a day for a month and as long as your blood tests have normalised reduce the dose by 5mg a week until on a maintenance dose of 5mg od. I am arranging for you to see the pharmacist at Treliske to commence Methotrexate, I feel both strategies need to be employed.
Why do you think he thinks I need the mtx as well as pred's? Do you think the preds reduced at the appropriate time using the dead slow and nearly stop method should be good enough on its own? I have read about the dreadful side effects of mtx and with having to up my preds to 40mg will be bad enough (I expect I'll be like a zombie again plus all the other side effects I had before when on a high dose) without having to cope with another drug as well.
Sorry for such a long post but I know you good people like to have all the facts to give your thoughts too.
Many thanks for people like you! When my daughter read the rhuemy's letter she said 'better get on the forum to your mates'!