The day started off well, we left home at 7.30am to get to Manchester on time for the appointment. It’s quite a drive and of course there’s always traffic at that time in the morning and we didn’t want to risk being late. I hadn’t slept much anyway (too excited I think!) so was up and about quite quickly for me; it was typical in a way that I felt pretty good when I saw my Rheumatologist, they never seem to see me at my worst but hey ho.
I was still a bit concerned about the missed calls last night but figured they were probably just checking that I was still going. Everything was on track when we got to the ward thankfully, we just had a bit of a wait before I was shown to my room and then the nurse came and talked me through everything – I’m the first person to be prescribed Abatacept at my hospital, so it’s new for them too.
After the canula was fitted and I’d had some bloodwork done, my rheumatologist came to see how I was; I think my mum had rang during the week to say I’d been quite poorly, so he was probably surprised to see me looking as well as I did, although I’m sure he understands the ‘rollercoaster’ nature of this disease as much as we do. We had a good chat about things and he agreed that I could increase my Prednisolone to 40mg for the wedding and then reduce them quite quickly afterwards. This is a relief, since I’m still worried about how I will manage to get through the next three days, it just seems physically impossible.
We had quite a wait after that as the Abatacept has to be mixed especially, alongside the chemo drugs, to make sure it is sterile and this only happens in the afternoon. It gave us chance to pick up my Methotrexate prescription and then a cooked lunch was served – you’re probably cringing at the thought of hospital food, but as far as it goes it’s actually pretty good so no complaints from me.
The Orencia finally arrived at about 2pm, just one tiny little packet. The nurse sat with us as it went through, since we weren’t really sure how things would go. I’d been told it was usually well tolerated, so I wasn’t expecting there to be any terrible side effects, but it’s always better to play it safe. Anyway, I felt fine but it did take a little bit longer to go through than expected because the line kept claiming to be blocked, but still only about 40 minutes. The difficulty could have been down to my weedy little veins, but the line seemed to be positioned okay so who knows… I think we’ll try a different vein next time though.
After that I needed to be monitored for an hour or so, just to make sure there were no adverse reactions. It was just after 3pm at this point so my friend agreed to a slight detour and got off her train at Manchester instead, making her way to the hospital to meet us. The only ‘effects’ I had from the infusion seemed to be a five minute spell of feeling a bit tipsy, almost as if I’d drunk a glass of red wine a bit too quickly – that warm, tingly feeling you get – but it went as fast as it came on and wasn’t exactly unpleasant.
Then I was free to go, with my next appointment booked for Thursday 14th July, which is in two weeks time. I may be imagining things – perhaps it is the adrenaline kicking in now that the weekend’s events have started – but I feel like it is helping already, as if the strength has returned to my arms rather than the weak, floppy feeling I have become accustomed to. I guess only time will tell, but I am feeling hopeful and positive as I write this. I’m sure there will be many toasts this weekend but I’d like to offer my own:
To Abatacept and a new start in health 🙂