Infliximab #8

Yep, its been the two month wait for Infliximab. Feels longer; it was overdue by a week, caused by scheduling problems. Alas, I attended the hospital yesterday; after a problematic and rough week or so; very glad to be there and finally getting my infusion.

Prior to this, I had two lots of bloods taken. Both were okay, not as good as usual – WCC was up along with my CRP but my LFTs (and associated liver function tests) were falling FINALLY! – but what was troublesome to my GI, IBD nurse and infusion nurse, was these tingling sensations I was experiencing about three weeks after my last infusion. It happens in my feet and hands,  lasting long enough to provoke an email to the IBD help line and they requested that i needed to see the consultant for a check before I receive my infusion (again). As these have become abit more than an singular occasion, I shall explain: this means going through my recent IBD medical history, any problems during the eight weeks since last being there and a simple neurological exam. Normally my joints flare up the weekend before I’m due my medication, accompanied with a couple days of chronic diarrhoea. But this time, my joints weren’t swollen or even painful – and I couldn’t even remember the last time I really complained about the pain – but I was definitely experiencing the brunt of a good dose of bad bowels.

Despite all that, we continued with the infusion. The warning again of if I experienced the numb or tingling; in my fingers especially, I would have to give up receiving Infliximab. Conveniently – or inconveniently, depending on your outlook and how this progresses – I am at the end of my year of funding too, due a MRI and double scope to see how well Infliximab has helped with my moderate to severe Crohn’s Disease. But more on that next time.

I happily sat there, got canullated without a hitch (some good luck for a change) and got hooked up to the pump for just under an hour. About ten minutes before it was to end my left hand starts to feel weird; pins and needles, with moments of being completely numb on the finger tips. I naturally tried to ignore it – thinking it was just my arm falling asleep from being static for so long – but it got stronger, and given where my canulla was, I panicked when I could feel it moving up my arm. Please let her of hit a nerve with the needle and that be it, I pray.

I notify the nurse when she comes to unplug me from the pump and she isn’t as shocked as I would have thought. Am I make too much of a deal about this? Is it more common than I think? She tells me that maybe its just were the canualla is and it will get better once its come out and there is no pressure on my fat, muscles and nerves in my forearm. It does feel better once its out but still tingling all the way home from the hospital. I keep stopping and testing my left and right hand; by touching finger tips of the same hand together lightly. Not as numb as before. Improving all through the evening and I woke up with hardly any discomfort.

Unfortunately, if it does return – regardless of the time scale before the next infusion or the duration of the feeling – we have to look at another treatment plan. I really don’t want this. As much as it is a pain to get out of work and to the hospital – compared to doing Humira injections at home, for instance  – this has worked fantastically. As I said to someone last night,  it has given me the much deserved chance to not be so fatigue and actually be able to make a smooth transition into my current job role. Thankfully, my new employer and colleagues are much better at giving reasonable time off for me to attend medical appointments. But still, the news had made me blue. No matter how many times they tell me, I still do not like any of the other options. Am I meant to like anything that I invite into my body to fight my battles for me?

Added to that, I feel frustrated and angry and utterly sad that my body is still finding things to disrupt my life. Maybe I am putting bad drugs – medication wise – into my system that it can not tolerate. I wonder how much more I can take  – both mentally and emotionally, let along physically – before I have to make decisions. We are already discussing long term effects versus the benefits of long term maintenance therapy something which given how little time has passed since my diagnosis – let alone my first symptoms – feels massively overwhelming. It is alot to take in. And I spent alot of my “stare off into space” moments contemplating thing such as those.

Added to that, I’ve had an infected tooth and a referral to have my wisdom tooth removed. Despite how much I am dreading the needle in my jaw, it needs sorting. Even off antibiotics and doing everything I can to keep it clean, it still causing temperamental periods of pain. Frankly, I don’t have time for it to play up again – I spent three days in agony, waiting for the treatment to reduce the swelling in my mouth so that I could eat – nor the patience to wait and wait again. Lets hope its out in the New Year!