I had my Sixth and final Tocilizumab infusion today. After giving it this long to take effect and my symptoms appearing only to worsen, both my Rheumatologist and myself felt that it wasn’t doing the job it was supposed to be doing. Even switching my secondary DMARD from Methotrexate to Cyclosporin, which had always been beneficial to me in the past, has done nothing to boost its effectiveness. It all looks great on paper – with my inflammatory markers (CRP, ESR, HB, WBC) all returning to within a normal range – but physically, the evidence of inflammation is undeniable.
I arrived on my ward at lunchtime and had the usual bloods and observations taken; everyone wanted to know how I was after my hospital stay (a month ago already!) and couldn’t believe how I had deteriorated since I was last there in January. In fact, the general consensus was that I had been slowly getting worse since starting the Tocilizumab infusions in October 2011; at least on Abatacept / Orencia, I had maintained some level of stability, even if this did involve significant joint involvement and disease activity.
My Rheumatologist came to see me shortly after. I’d spoken to him by email previously and knew he had been considering my next treatment option and that this was likely to be an Anti-TNF drug. The drug he has selected to try is Infliximab / Remicade, one of the older anti-tnf drugs and one that works slightly differently to Enbrel as it forms antibodies, rather than receptors. The main reason he has chosen Infliximab is that there is greater opportunity to play around with the dosage; he is going to give me a much higher dose than normal and wouldn’t be able to do this with the newer anti-tnfs. Hopefully, this will give the drug a better chance of gaining some control over the Still’s Disease quickly or at least allow us to judge whether it is working much sooner.
What is even better (for me at least), is that I can start this new treatment on Wednesday next week, as he has already organised the funding and paperwork etc, so no waiting round! It’s such a good feeling to know that something is going to change, something that could finally bring me some relief – a new hope – and so soon. Starting it straight away will also mean that I should receive a couple of infusions before our trip to Dublin for my boyfriend’s 30th Birthday in April, which will be great if it works, (I did also ask about a back-up plan of pulse steroids to get me through the trip, as I did with New York, so hopefully I should be covered). I was surprised that we still went ahead with the Tocilizumab today, but as there is a chance it is doing something, he felt it more of a risk to stop.
We talked about things in general and he admitted that my Still’s Disease is becoming a problem to treat; we really are running out of drugs to try now and I’m becoming less responsive to steroids. I guess that’s no surprise after fifteen years of Prednisolone and other various forms of steroid / cortisone therapy though. This is difficult to hear and maybe I’m in some form of denial, but I refuse to give up on my optimism until I’ve tried everything available to me. I think the hard thing is knowing that I have managed to control it in the past and lead a relatively normal life and so I’m convinced there must be a way of doing so again. It’s going to be difficult to take in if this proves not to be the case, but I’ll cross that bridge if I come to it.
He left me with an appointment to come back on Wednesday and said that he would see me then; I was slightly disappointed that he couldn’t sort my knees out, but I have had too many steroid injections already in the allotted time frame. The Tocilizumab infusion arrived earlier than normal as they can now mix the drugs on the ward, rather than with the chemo stock; an hour or so later I was on my way home. As always, I was feeling exhausted by all the information I had to take in, but at the same time I was pleased to be coming away with a new plan of action and one that would put in motion so soon.
I’ll be counting down the days,