I don’t know where this week has gone and can’t believe I’ve neglected the blog for so long, it’s not as if I have nothing to write about.
To update you on the Still’s situation I need to go back to mid-September and my last Orencia infusion, which was quite literally my last. My blood test results weren’t looking any better at all and the fact that my knees were swelling for the first time in ten years seemed to prove a point; so, both myself and my rheumy came to the conclusion that Orencia wasn’t effective at treating the majority of my symptoms and never would be. Instead, he decided to put things in motion to start Tocilizumab (RoActemra) at my next appointment if the funding application went through fast enough.
I’m pleased to say that he emailed me at the beginning of the week to let me know that my local PCT has agreed to fund the switch to Tocilizumab and I shall be having my first infusion on Thursday 13th October, on the same ward as I’d been going for the Orencia. I’ve heard a lot of good things about this drug and so I’m trying to keep optimistic, although it’s hard to when I haven’t responded typically in the past.
My joints were in a pretty bad state when I saw him in September too, I was finding it difficult to walk/dress etc and needed a few cortisone injections – there were plenty of joints to choose from but in the end I went with my locked left elbow (hoping that some would travel to the shoulder/wrist) and my right knee (hoping it would help the hip too), which I needed to be up to walking the streets of New York. Thankfully, the injections and a short boost in prednisolone did the trick and there was only one time that I struggled on the trip.
Even the time difference didn’t send things flaring, which I had half expected because I know what a major role my sleep pattern plays in keeping me ‘well’. Usually, I only have to go to bed a few hours later and I suffer the next day – I can’t sleep in as that makes me feel rotten, but even if I did I wouldn’t feel any better. But I managed to say awake for almost 24 hours on both journeys – must have been the steroid rush.
Since being home and reducing my Prednisolone, the aches and pains have slowly started to creep back in but I’m still doing better than I was last month and have been trying to make the most of it by sorting out a few things around the house. I guess it makes things easier knowing that I’ll be trying a different approach next week.
I’ll leave it there for now and promise not to leave it as long in future – there is so much more I need to write about, not to mention catching up on my articles!