As I’m sure everyone else who takes steroids or has taken them, the gradual drops in the weekly, bi weekly or monthly doses is met with jubilation. I found myself getting rather exciting to moving from 10mgs to 5mg next week and finally stopping them on my birthday, two weeks away.
Sadly, my GI is not sharing my jubilation. I have to continue Prednisolone for at least another 6 weeks. This “interim” “medication free” lifestyle is sucking.
Above is my new daily regime. Moving from 10mg to 9mg means FOUR more tablets every morning. Delightful! More hamster cheeks, more chubby legs and more horrible sweats. Wonder-fricking-ful.
His reasoning is based on my recent talk with my IBD nurse. I described my bloated belly and my increase in pain. Not in my gut, oh no, it all those joints that a new Rheum will hopefully assess and sort in June. Until my next GI clinic, I must continue with my Mesalazine and Pred courses until I go back. Hopefully by the middle of May, I will have a clearer picture of my disease activity and where we should go from there. We did discuss using Infliximab at February’s appointment, but to quote my GI “let’s not use a sledgehammer to crack a walnut”. This phrase has been used throughout my courses of treatment since my diagnosis 18 months ago, and up until yesterday I wasn’t keen on the theory behind it, nor its sentiment. For me, it had always seemed as if my GI and IBD nurses were in cahoots to get me to jump through so many damn hoops to get anything done. It felt at times that my symptoms weren’t taken serious enough and I was encouraged to just “keep trucking along” until it got bad enough for them to intervene. However, on a day-to-day basis, things have got worse. To even just come off Humira, when my symptoms were stressing me out and causing lots of mild side effects, I need to have a clean colonoscopy and clean bloods. It feels alot like that again, but I somehow believe in him more. Maybe being referred to a Rheum for my joints and generally being able to better manage my pain (my somewhat difficult struggle to take other pills has been utterly removed as of late) but his consistent terminology has rung true this time.
I would rather be on low dose Pred and manage my weight and pain without more Crohn’s medication. I am somewhat relieved that he wants to wait longer before deciding on Infliximab. To wait longer before flooding my system with new stronger drugs that could just mask everything until a big pile of shit (literally) hits the fan. So, I am okay with waiting. Last night, as I struggled to eat because of reoccurring wisdom tooth agony, I contemplated what a new biological treatment meant for me in the long run: Would it help? How long could it last for? If it failed, what would be my next option? I’m pretty sure that after Infliximab, it is surgery. I’m not okay with that yet, I actually feel well enough to not need the next level of medication. If only my body would tolerate Azathioprine abit better, I would be golden, I could sit here and not be wondering about the Crohnie future so much. I could be better equipped to find a new job (safe in the knowledge that my medication status is stable and I am in turn, committed; more about my feelings towards my employment later this week hopefully) or getting fitter by exercise because I’m not so fatigued or unenthusiastic. It could be all I need.