I had my second dose of Infliximab yesterday, a fortnight after the first. It was another long day, but everything went fine and so it shouldn’t take as long in future. We arrived on the ward at about 10.30am and were taken to my room, where I had my cannula fitted and my blood tests and SATs taken; I was also weighed and have put 2kg on in the past two weeks, ugh. I’m hoping it is mainly fluid retention, as this is becoming much more apparent via my lovely moonface / hamster cheeks and distended tummy. I can still fit comfortably into my clothes, but if it carries on at this rate, I won’t be able to for much longer! With those formalities out of the way, it was back to the ol’ waiting game.
The nurses that look after me kept popping in to see how I was and to say that I look much better than I did this time two weeks ago. They’re all excited that this is going to be the drug to turn things around too. It must be nice for them to see a patient improving with their treatment and care and I’d love to be one of the success stories again. I managed to get about the ward on my crutches, rather than the wheelchair, and we joked that I’d be running up and down the corridors next time… you never know!
I saw my Rheumatologist in the afternoon. Like me, he is wary of getting our hopes up too soon; but, he did say he was cautiously optimistic, considering all of the high dose steroids I have received recently – I haven’t seen an improvement like this before. My left elbow is much straighter, the swelling in my knees a lot less than it was, and pain / movement is generally better. Even my temperature is lower. If it is the Infliximab helping, then I should see more improvement this time round and my Rheumy was confident enough with my progress to start reducing the Prednisolone, woo hoo. He told me to get in touch if I felt I needed any joints injected / a boost before our Dublin trip, but we both had a feeling I wouldn’t. So really, it was good news and smiles all round! 🙂
The Infliximab arrived just after 2.00pm and I was soon hooked up. I didn’t have the IV steroid beforehand this time round, just the anti-histamine. My nurse sat with us for the first half an hour, as allergic reaction is a particular risk during the second dose, but I was fine; the only thing I felt was very, very sleepy – if I closed my eyes I’d have fallen asleep sat there in the chair! It took just over two hours for the infusion to go through and I had my SATs taken every half an hour. There was another half an hour for the saline flush that followed, then I had to stay for an hour just to make sure that I didn’t have any delayed reaction, although this is unlikely – the riskiest time is the first ten minutes, but it’s better to be safe than sorry.
While we waited, my nurse asked about the side effects I had noticed after the last infusion and noted these down: The sore mouth and tongue rash is actually the most common effect that people on my ward have reported, although a lot of people treated with Infliximab there have Crohn’s Disease. It is something that should become less troublesome over time, I guess as the body adjusts to the new drug, and she advised I get some Corsodyl mouthwash. If this didn’t help it could be fungal and so might need Nystatin drops. The leg pain has been reported by two other women, one of whom actually went to A&E because of it. In both cases it was temporary and both women also experienced significant improvement in their condition; so, although she didn’t know what the cause was, the nurse wondered if it was some sign that the medication was actually doing something. Let’s hope so!
At about 6.oopm I was free to go; another long day but, hopefully, worth it. My next infusion is booked for four weeks time, which is 18th April, and I have the trip to Dublin in between. I know I’m not supposed to be getting my hopes up too much, but a lot can change in two weeks and even more in four. I can’t help but feel a little bit excited.
As always, only time will tell.