|A "Happy" meal I had over Christmas|
A belated Happy New Year to everyone out there. January 2015 marks the 3-year "anniversary" of when my CLIPPERS symptoms retreated far enough for me to function more or less normally. At the time I was still on tapering Prednisolone and attempting to ramp up Azathioprine while dealing with a few wobbles in various blood tests along the way. I remember book-keeping the changing doses of various drugs needed a certain amount of organisation. There were worries about long-term prospects in 2012 (there still are!) but I have been lucky to be stable on Azathioprine for some time now.
Although Azathioprine is a common CLIPPERS treatment in conjunction with steroids, I don't recall any cases being reported who have remained stable for this long after the complete removal of steroids. It would be interesting to know if anyone out there is being treated similarly. Am I simply lucky, an anomaly or living on borrowed time? I still occasionally try walking "heel-to-toe", standing on one leg with/without eyes shut etc to try and pick up any early signs of recurring problems. It will be interesting if, as part of their CLIPPERS study, the Mayo team have any comments on my case compared with others.
Finally, a reminder that for those interested in events which raise the profile of rare conditions, the annual Rare Disease Day is coming in February (28th to be precise).
Read other articles in this series at Living With CLIPPERS.
Living With CLIPPERS by Bill Crum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.