We made some progress today, in that I was able to sit up a bit more and eventually moved into a special reclining chair that one of the lovely male nurses managed to wrangle for me. This proved to be a fantastic help over my remaining days in hospital; it was remote controlled, raising and lowering as well as reclining, and so I was able to sit/stand without bearing too much weight through my hips. It was also a lot more comfortable than being stuck in the bed all day, with my legs stuck out in front of me; it’s surprising what relief a change in position can bring. Now that we knew there was no damage to my spine, I was able to switch between the two and make further steps towards getting myself more mobile – things were looking up.
And then came the ward rounds.
My Rheumatologist’s Registrar came to see me with a few other curious doctors. He told me that there was no infection present in the fluid they had taken from my hip on Friday and so it was looking like the Synovitis and Joint Effusion was down to an exacerbated Still’s flare. He said he believed that the Still’s was getting worse because the Tocilizumab wasn’t working, despite the improvements to my bloodwork. He then went on to say that that the problem was, I had tried all the different mechanisms of drugs by this point: Enbrel, the anti-tnf, Anakinra the il-1 receptor antagonist, Abatacept the T-Cell inhibitor and Tocilizumab the il-6 receptor inhibitor.
As a result, he said I had run out of options and that my main hope was for them to look into future clinical trials that may include Still’s Disease patients. He mentioned the possibility of returning to anti-tnf therapy but felt that there was only a limited chance that I would respond after forming antibodies to Enbrel previously. I was lost for words and he went away leaving me in a lot of doubt and feeling quite scared about the future. I have always known that my Still’s Disease was difficult to treat and did not follow the typical pattern; my Rheumatologist and I had often joked about how complicated I was, but we had always had a plan of action, another drug in the pipeline if the current one didn’t prove a success. I had always had faith that we would get on top of things eventually, even if it was a long, hard struggle to get there. Was I wrong to be so positive, naive even?
For the rest of the day I was out of sorts; I became tearful when I needed help from a nurse to go to the toilet, frustrated with my dependence and disability all of a sudden – was this going to become the norm for me? I spent a lot of time talking to my friends and family about it and they reassured me that I needed to see what my Rheumatologist said first; as I said before, he had always kept me optimistic about my future. He came to see me at about 6pm that day; I can’t remember the conversation now but nothing he said made me feel like a lost cause. Instead, he suggested that we persevere with the Cyclosporin a bit longer (with the Tocilizumab), since that had always brought some level of control in the past and I had only been on it for a few weeks at that point – some of which may not even have counted, since it is possible I may not have absorbed any medication while I had chronic Gastritis.
He admitted things were pretty dire and couldn’t offer me any guarentees, but he at least didn’t make me feel like I had completely run out of options. I was able to relax a bit more and focus on the here and now again, taking small steps towards getting back on my feet and home – washing at the sink, using the toilet, getting between the bed and chair on my walker etc.
But I have to admit, the Registrar’s claims have been niggling away at me ever since.