I am a 71 year old who was diagnosed with (wegeners) MPA during Oct. 2015 after 18 months of a gradually worsening condition. It was confirmed following firstly a lung biopsy which showed up granulomas and then a kidney biopsy which showed inflammation, so along with the joint pains ect. I finally had my diagnosis!
I was then prescribed azathioprine with 20mg steroids but the aza. made me very ill so this was then changed to Mycophenalate of 2 x 500mg morning and again in the evening.
Now just over two years on and the steroids were stopped a year ago and I stayed on the MMF as prescribed until end of Oct. 2017 when my nephrologist agreed to start and reduce these too.
So, from Oct last, my MMF was reduced to half my usual dosage which I was on until my next appointment with him mid Nov. and I now take just 1 x 500mg tablet a day until Mid of Jan 2018 when he says to stop them altogether and he will next see me by end of Feb after my next blood tests.
I have been monitored every month by the Rhumy nurse with monthly bloods checked, and I see the nephrologist every 3 months. My condition has stayed steady and improved for the last year with creatinine level last reading 118 and egfr at 51.
So, although I am very happy about my results and my general health this last year, I still have some concern about actually stopping the MMF altogether, and just maintain the blood pressure tabs to keep that under control.
I am I suppose in remission, and wondering whether the meds have been reduced at a timely rate? My nephrologist doesn't believe the condition will reoccur, and I'm hoping he's right. I know there is a lot of experience here so just wondering if there are any questions I should be asking before I am taken off the regular hospital appointments list?
Wishing everyone a good 2018. x