March Madness & MXT

March was a blur of appointments and being in and out of work. I last left it waiting for my IBD nurse’s clinic appointment – a Wednesday morning, two days after being back at work and getting more sighs from my line manager about “more time off for an appointment” – to discuss my options.

She has had my blood work back – for my antibodies and trough levels – and they were sky high. I still haven’t been able to get the parameters for these two tests, but she described my antibodies as thus; “there is a limit of 200 on the scale, you are *way* above it“. Simply put, my body is fighting the drug, as soon as it comes into my system. And by the time I have the follow-up one – which should just be a top up, in theory – there is hardly anything. No wonder my body is in so much pain, it’s fighting, every single day, to keep me going. No wonder I am exhausted.

The plan was to push my case to the top of the MGT meeting the following Tuesday – hours before my clinic appointment with my consultant – to issue my infusions six weeks apart. I was to continue the steroids and hope nothing untoward happened in the mean time.

So I returned to work that afternoon to be told I was being made redundant at the end of term, a mere three weeks away. Talk about piling on the shit, pun intended.

Fast forward a week to my clinic appointment with my consultant; who has only been in charge of my care since I started Infliximab back in November 2013. He has only my medical notes and me to explain to him about my experiences of drugs and care before that date. That being said, we discussed at length my options, as they stood then. He never talks down to me and always makes sure I understand the risks versus the benefits of everything we could try. Since the start of 2015 I have been more vocal in what he has planned beyond this current treatment. I always want to be one step ahead and never have the terrifying fear of being in between treatment plans.

It started with my blood results; antibodies and trough levels. Knowing how bad they were and how it was probably unlikely I would be able to retain the drug like I did in the very beginning; he suggesting maybe switching back to Humira. He asked about my experience on it, knowing that my file documented the majority of it. I said it was bad by the end, I felt very much like I do now; unwell but not sick enough to be hospitalised by it.

Then it was Infliximab and Methotrexate. This would be having a six weekly schedule of Infliximab and a weekly dose of MXT alongside a routine of folic acid to counteract the side effects of MXT (low dose chemotherapy, well used in Crohn’s Disease for achieving and maintaining remission, alongside biological treatment). “Chemo” drug; immediately has me on edge; am I that sick now? Has it gotten to this point already?!

Following that, he suggested experimental drugs – some of which I can’t remember, the side effects *did not* outweigh the positives – and then a referral; for a bone marrow transplant up North.

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The lesser of all the evils discussed on that appointment was the Infliximab / MXT combo. He wrote me a script for a months supply of MXT and folic acid and asked my IBD nurse to schedule my infusion. This is what it now takes to keep me “healthy” – and not even healthy in the same sense of everyone else, not suffering from an autoimmune disease – taking a drug with strong side effects. Is this the start of slippery slope? I ask myself the same question, when do I call it quits on medication, especially medications like this?