Hi again everyone, since my post of 8 days ago I have seen my rhuemy and he has restored my faith in him looking after me. I am happy to report that he was very understanding and listened sympathetically to all I had to say. I told him I'd met with the pharmacist before Christmas and have got my MTX and the folic acid but have not taken them yet as I'm still not happy about it. I mentioned the forum and he was pleased to hear I take part and have benefitted greatly from it. I explained about the DSANS reduction and luckily had a copy of PMRpros plan with me together with all the notes she has written about how good it is and who has used it etc, he was very interested to see it and readily accepted my offer of keeping it to study.
He is now of the opinion that I've been unfortunate in having had this large vessel vasculitis from the beginning as well as GCA in my head and shoulders etc. He also agreed that I've probably had PMR for lots of years which I readily accepted as normal aches and pains for a retired farmers wife who had dealt with tons of bags of potatoes and crates of cauliflower over a 15/20 year period in my life.
I mentioned that he was reducing me faster this time than when first diagnosed, I also had my calendar of highlighted steroid reductions with me that he too was impressed with as we studied it In trying to decide how I was going to reduce fron now on. He quite understood about me not wanting to take MTX and agreed to forget it for the time being. So, he now wants me to reduce the preds by 5mg per 2 weeks until I get to 20mgs, then by 2.5mg until I get to 10mgs, and then if my blood tests are ok and I'm feeling alright I can go on the DNANS plan hopefully with NO MTX! I didn't have to mention Tocilizumab as he brought it up while discussing drugs in general with us (hubby was with me) he uses it with his RA patients but hasn't heard anything about the trials with PMRGCA as yet. He did say that he prefers MTX to Toci: as it is not so harsh (can't remember the exact word he used).
I was told by him and the nurse to see my GP at any sign of infection, I've had a flu jab and he's going to mention me having a pneumonia jab as well to my GP when he writes.
He doesn't want me to continue taking my preds in the early hours as it may not be good for my adrenals.
He will see me again in April.
That just leaves me to say a big thank you to all but especially to PMRpro who in her last reply to me gave me her thoughts that gave me the courage to tell my rhuemy how I felt, and it paid off!
Thank you so much! Sandra.
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