At the last consultant appointment, which was two days after my father died, I was told by the doctor At the last consultant appointment, which was two days after my father died, I was told by the doctor that she thought I might be in remission. So she wants to withdraw my meds (methoxtrate + infliximab). Additional reasons are that I have fatty liver disease and a reaction to sunlight (which has since stopped even in the bright autumn sunshine). I’m not confident – she hasn’t done any tests and I managed to defer the implementation of this decision to the new year – as my world had been recently turned upsidedown by my father dying. I’m trying to find research or experiences of remission. The academic literature I’ve found (Curr Rheumatol Rep 2010 vol 12 p. 355-362) says that there’s very little evidence for real remission, and that there could be dangerous subclinical inflammation which can only be detected by checking with ultrasound or MRI. It took me many years and tears to get to the level of well being that I’m at now. I know that even if infliximab is working now, if its withdrawn there’s no guarantee that it or any of the more advanced biologics will work in future. And having seen my father nearly reach 102 I really don’t have huge ambitions to reach that sort of age. Any comments will be very helpful I hope! I am trying to be positive incidentally and am extending my exercise programme - in the autumn sunshine this is so lovely.
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