So, its been eight weeks since the last hospital visit for the magic mouse juice.
This time, I was due to have a two-hour infusion and only one hour of observation. I had gone the eight weeks as was set out by my GI, IBD nurse and the hospital’s Gastro MGT team. Eight weeks are the standard set of time between infusions. As I had gone up and up in time between the first initial “loading doses”, I was now going a whole two months without another infusion and boy was it a long time!
I had a great first month, in which I steadily increased my work hours, my energy levels gradually grew and settled into a regular pattern, my diet was much more flexible and felt ridiculously well. It wasn’t always brilliant, but the few bad days I encountered were nothing compared to what I had been dealing with before Infliximab came into my life.
About midway through the second month, I got tired one day – not from doing too much more even being awake all night, as I was sometimes used to, thank you insomnia and a stupid over thinking brain! – and I couldn’t shake it off after a couple of days of resting. I got worried, my bowels starting reacting to everything I put into my system – with hindsight, I might have really gotten over-anxious and stressed played a big part when it wasn’t my food causing problems – and I had to go back to a plain and almost liquid diet for the last 10 days of that cycle. During this time, I was worried, naturally, that this was the end of Infliximab. I had been warned from the beginning that Infliximab can just stop working sometimes, and I would have to tell my IBD nurse if I was becoming symptomatic again. So I called, explained the situation as best I could and she advised me to speak to someone at my next infusion and to review my blood work. I went off, got my bloods done, attending Infliximab #4 feeling shattered beyond belief and hoping the medication would really kick in quick this time.
After running almost an hour behind, my infusion was started and I finally got to speak to the infusion nurse. I explained how awful I felt and how grateful I was to be there. I basically told her about how much pain I was experiencing in the last two weeks of my cycle and could we possibly move the date forward of the next one, to seven weeks time? It would all have to be discussed and I would need to be monitoring myself closely until I saw my GI.
I agreed, not knowing what this might really mean, and spend the next two hours napping in my infusion chair and only been woken for my obs to be done. Once I was home that night, I just got into bed and slept until morning, where I had to get up early and go to work, only to feel no better and be disappointed all day. It took a whole 6 days for my body to finally realise I was Infliximab-ed and I felt better.
The pain I felt at that point in the cycle last time, has me concerned and abit worried for this time. So, I took precaution. I booked my first lot of annual leave for the week before my infusion, my actual infusion and the day after. All before my birthday, so celebrations will have to wait, if any at all. Since being at the hospital last, I returned to have some urgent bloods done, yet to any avail and my GI clinic appointment got moved back to just before my infusion. My IBD nurse warned me that if there was a “problem” I might be taken off Infliximab. I’m unsure if and how that would happen; which circumstances would lead to that – if I became worse, if I had normal or bad blood results, if I needed my infusions sooner without evidence or the evidence I had provided proof of a new ‘ different problem – and that wouldn’t become clear until I attend clinic.