Hi Paul.I have been on 40mg prednisolone along with enbrel injections 20mg mxth & 50mg (liquid every day) plus morphine.I was so ill with all my joints in wicked pain my consultant urgently got me rituximab infusions so far so good.Then i started to slowely come off prednisolone.So maybe you need a medication to help you.I wish you all the best.Valerie-R

You are correct - I was on a path to Humira but it got derailed by the fact that one of the qualifications is an MRI scan showing lower back inflammation. However, we could not get one of those because the steroids that I was on masked the inflammation. Since then (last May) we have been trying to wean me off the steroids so we can get the MRI we need. Problem is that I keep hitting a dose at which some symptoms re-appear. So then I have to go back up a couple of steps and do a slower reduction, Based on the latest plan the earliest I am going to be off steroids is 56 weeks form now or March 2015 by which time I will have been on them for nearly 2 years (and off work for over 2 years)

My wife had been googling my condition (Sero-negative enteropathic polyenthesitis) and has discovered that you can actually be symptomatic whilst having no detectable inflammation on CAT or MRI scan so when we get to zero steroid we may still not get the MRI evidence they want.

There's no other way to describe it. It's a bugger.

hi Paul,

what a palava you face then, didn't realise an MRI or CAT Scan was needed.

and a long haul on steroids,

it can be a very long haul for some i know, i'm thankful i was sorted in 18 months which felt like a very long time at the time!

Suzanne