Yesterday, was the day. The day we (or at least I) had been waiting for. The day I had my very first dose of Infliximab ( trade name Revellex or Remicade, depending on which country you are in), a biologic drug which is a TNF inhibitor.
I was pretty sure I knew what the procedure for the day would be, having read quite extensively about it, but I guess you never really know till you experience it, or perhaps it is simply that reading and experiencing are two different things. I guess what I’m saying is you will never get the picture in your mind before hand to be a replica of what the real experience would be.
So after that long aside, can you tell my mind is a bit fuzzy today, I should probably get to the punch line.
We arrived my rheumatologists office at 8:30am, which is a struggle for any one who needs an inordinate amount of sleep to be able to function. Once there we were greeted by a puzzled nurse, wondering why we hadn’t gone past the pharmacy to collect the IV pack, not knowing that no one had taken the time to mention this to us before hand. So instead she started by taking a urine sample (which apparently they will check every time I come for an infusion, ugh), and then kindly directed us to where the pharmacy was.
We were finally shown to the infusion room, which was a small room with four very large comfy chairs, where the infusion was to be done. When asking the prerequisite questions before the infusion could start the nurse seemed to become unsettled when I told here that I had a fever yesterday, despite me saying that I had low-grade fevers daily, as part of my condition. So instead of starting the IV then, I had to wait to see my Rheumie first, as the nurse was worried that I was sick, and you can’t get a biologic treatment while you’re ill. This is because it lowers the immune system further, and opens you up to possible complications or exacerbation of the cold or flu or what have you.
So finally once the Rheum had given the all clear we were ready to start, and the first of what seemed a billion observations began, as they checked my pulse, blood pressure and temp every fifteen minutes for an hour, and then every thirty minutes.
As we started, temp normal, blood pressure on the low side as usual, and pulse high, which is also normal for me, but I think a pulse of 140 bpm (beats per minute) just seemed to add to the nurses anxiety. It was while doing these observation, that we met the first challenge for the day. The blood pressure cuff was a bit too big for me 9 or actually really way too big), and therefore would pump up way past were it normally would. It felt like it wanted to squeeze my arm until there was nothing left. So thus began the search for a smaller cuff. And it really was a search, as one after another cuffs were tried, and deemed to be too big. The nurse finally went over to the pediatric department where they gave here the biggest kiddies cuff they had. On putting it around my arm the nurse said to me “don’t look at the age it’s for”, so of course I had to look. Guess what…. it was for a nine year old. A nine year old! I can’t believe I have a nine year olds arm, I still kind of don’t.
As the infusion goes on the speed up the rate, at 15 minute intervals. This is in order to reduce reactions to the meds, as an anaphylactic or even a milder reaction is the worst thing that can happen, and was the thing that I was anxious about. But luckily the infusion went just fine, only making my shoulder of the arm the drip was in saw, giving me a headache and making my throat hot and burnt. All of which I could deal with.
After a couple of hours shared with some other lovely people who were there for their infusions, and who were quick to make me feel at home, share some of their stories and knowledge, and just generally keep me company, and I guess in turn, I them, the infusion was done.
Lastly they infused a much smaller saline drip through, in order to ensure that every drop of that pressure, and expensive med, went into my system.
Finally, after promising to come back in 2 weeks, I was free to go home, where I slept for 3 hours. The infusion having made knocked it out of me.
Now the waiting game begins, as we wait what could be 2-6 weeks to see if we have struck gold. So know all there is to do is hope that this time it’s that all elusive “one”.