Apologies, thought I’d posted this but it has been sat in my drafts for a month, oops.
I was well overdue my infusion by the time this morning came and couldn’t wait to get going. It’s like one of those ‘you know when’ lines: ‘You know when you have found the right treatment when you look forward to being hooked up to an IV for four hours’.
I arrived on the ward at about 11am and had the regular tests. I was a bit surprised to find out that I had put on even more weight since last time, when I thought I was losing it thanks to reducing the Prednisolone. I’m now 67.5kg, the heaviest I’ve ever been I think, (I was around 40kg at one point). Maybe I need to watch what I eat more closely? Although I stopped pigging out with the Steroid munchies weeks and weeks ago.
Anyway, my blood test results were great. My inflammation markers are still low and my anaemia improving, which are both signs that point towards disease control. The Infliximab was already on the ward, so it wasn’t long before I was hooked up and ready to go. The nurse did struggle to get a line in this time; even my ‘good’ vein is starting to shrink away and is difficult to cannulate, despite my attempts to plump it up with the tips outlined in this previous post. Eventually, some hot towels did the trick but I don’t want to think what will happen if they ever didn’t. I know a portacath was mentioned in the past, but hearing my friend’s experience with hers has put me off a little. Hopefully it’s not a decision I’ll have to make in the near future.
My Rheumy came to see how I was doing and was pleased to see me looking so well and off the crutches. I told him about the few little niggles I was having – not to put a downer on things, just to be honest. I said that I’d noticed some symptoms coming through from about 5 weeks post-infusion and so we have decided to try it every 6 weeks instead of every 8 weeks. Mainly though, he wanted to talk to me about work.
Its months since work last evaluated my situation and they have been in touch with my Rheumy for a report on my current condition. For once we have some positive news and can start to think about the possibility of returning to work with a ‘phased return’ and support from my employers. Obviously, this won’t be straight away. I need to improve my strength and stamina and make sure that I can maintain these improvements over the weeks and months to come. So we decided between us that September would be a good time to aim for, especially since working at a school it would mean a new year and a new start. So that is what I am going to aim for now, although we will be constantly reassessing this in case my situation does change.
The infusion went through without a hitch; I don’t even notice the hot flush and/or giddiness that I experienced during my first few. I left the hospital much earlier than usual, which was a welcome change, and am to come back for my next one at the end of July.
Hopefully, until then, things will just keep on getting better.