Once again, I could tell that it was time for my Infliximab (Remicade) infusion. A few troublesome joint were playing up and I was starting to feel more tired. I’ve got to the point where I look forward to my infusion day and I felt pretty positive today too.
I arrived on the ward in the morning and was given room number 12 – one I haven’t been in before (fascinating fact!) My nurse Lyndsey came and fitted my cannula and took my bloods; thankfully, she got it in first time, but then she knows my veins so well by now she could probably do it blindfolded. She took my obs too; my blood pressure was low, heart rate and temp a bit high, nothing unusual for me though really. So we settled down to watch the Olympics on the TV, while we waited for the blood test results to come back.
Lyndsey came in a while later and told us that my blood tests were back and my inflammation markers were all raised, so we needed to wait for my doctor to come and see me and give the go ahead before I was hooked up to my IV. These markers are usually a good indicator to disease activity but can also increase with severe infection. I’d say I was feeling generally well though and so this result came as a surprise to me. Yes there were a few niggling issues, but I wouldn’t have thought there was anything significant enough to cause such an increase, especially in my CRP, which was 50.
My doctor came and saw me a little while later and agreed I was looking really well. I mentioned the few niggles that I thought may be contributing to the raised inflammatory markers – the lower leg pain, elbow stiffness, finger stiffness, stomach pain and migraine; but he didn’t seem convinced that any of these would be causing such an increase. We wondered if it was just that I was well ‘due’ the Infliximab but even that argument wasn’t convincing, as I am so much better than I have been over the past couple of years. In the end, we agreed to go ahead with the infusion and just keep an eye on things to make sure there was nothing underlying going on, like a bacterial infection.
It isn’t unusual for my blood tests not to match how I feel – I mean, ironically, they were perfect while on Tocilizumab, even though my joints were very obviously not! I’ll have the blood tests repeated in a week or two at my GP surgery, just to see if there are any further changes, but hopefully things should remain stable. We are also going to try an even higher dose of Infliximab next time (I’m currently on 300mg), and my next appointment is booked for four weeks time, meaning that I will get another infusion in before the school term starts and I (hopefully) return to work. It also doesn’t leave as long between seeing my Rheumy, just in case.
I was finally hooked up to the IV Infliximab at about 2.00pm and it went through great. I don’t even get the hot, giddy flushes that I did during the first couple of times. It took just over two hours for the Infliximab and then half an hour for the Saline flush to go through before I was free to go. I’m always happy enough during my infusion; the individual rooms have a TV, I take something to read and have company too, so can’t really complain. It is a long day but it could be worse.
I left the hospital feeling pretty good – it’s been the first visit off crutches / sticks and the nurses that have known me for a while now were pleased to see so much progress. But at the same time, I am a little bit concerned about these blood test results. There are so many little troublesome things that I tend to push aside and ignore, I just hope that I’m not missing something.
Like I’ve said before, things are never straight forward with Still’s.
Ps. Looks like I had similar issues with my bloodwork at the start of my Orencia treatment according to this previous post.