At my last Orencia infusion on the 15th September, Dr S and I came to the conclusion that it wasn’t helping the majority of my symptoms, plus my bloodwork was either getting worse or staying the same. The decision was made to switch to Tocilizumab (RoActemra) and I had my first infusion today.
It’s been an extremely long and tiring day. I arrived on the ward only to find it extremely busy with the chemo clinic, so there wasn’t a room available for me. Instead I had to sit in the waiting area, having the nurses take my observations (BP, Temp, Pulse rate etc) from there; thankfully, we managed to hijack a room to fit my cannula, take my bloodwork and then, later, to talk with the doctor but it seemed an even longer wait out there.
My consultant was away this week so I saw one of his registrars, since it was the first time I had received the drug. He went through things really well and I had a good chat to him about further treatment options; it’s always interesting to hear a different point of view. Firstly, he explained why Tocilizumab was a good treatment choice for me (Commence Science Lesson 1 as understood by yours truly):
When we have flu one of the things that makes us feel so unwell is an excess of a cytokine called IL-6. This cytokine plays a role in the production of CRP, which is also an inflammation marker in conditions such as Rheumatoid Arthritis and Still’s Disease. Tocilizumab is an Il-6 Inhibitor, which in layman’s terms means it ‘mops up’ any excess Il-6, preventing CRP production. Because my CRP levels are consistently high when the Still’s Disease is active, it suggests that I am producing too much Il-6, and so there should be plenty for the Tocilizumab to ‘mop up’, in theory making me feel better.
This sounds very promising but, of course, there is no guarantee. He went on to say that if it didn’t work he felt it was good idea to return to the anti-tnf drugs because I had a really good response to Enbrel for a number of years (and so to Science Lesson 2). The reason that it became less effective is because my body gradually started to produce antibodies against it, which is why a person usually takes Methotrexate alongside Enbrel and other anti-tnf – to stop the antibodies forming rather than to treat the disease.
I was on Cyclosporin alongside Enbrel, which is another immunosuppressant drug, but perhaps it didn’t do an adequate job preventing antibody production; then again, it did a good job keeping things at bay. He suggests trying one of the other anti-tnfs alongside Methotrexate, although he also mentioned another drug similar to Cyclosporin, called Tacrilomus, which I’ve only heard a bit about. This is the only oral DMARD that I haven’t tried and that isn’t a nice thought.
Anyway, after speaking with the registrar and a bit more waiting, it was eventually time to be hooked up to the Tocilizumab. Things went through fine for the first half an hour and I was happily chatting away to one of the nurses when I suddenly came over all lightheaded, hot and turned a fetching shade of red. The nurse went to fetch another nurse that looks after me and they took my obs again – BP was lower, temp higher and pulse rate 148 but within 10 minutes I started to feel better and the results returned to normal.
We went ahead with the whole infusion, which took an hour in total, and then I stayed for an hour afterwards to make sure I was okay. I’m still not sure what caused such a reaction but I did have a bit of a ‘moment’ during my first Orencia infusion, only not quite as dramatic. My heart rate was already up a bit when I arrived today (125) and I haven’t been feeling too good all week, but there have been no signs of infection in my wound or anywhere else. Still, maybe there was something underlying that contributed to it and it’ll be a one off.
Unlike with Orencia, I am going straight into having Tocilizumab every four weeks and my next appointment is November 10th. The literature says that some people feel a benefit after only two weeks, so here’s hoping!