I’ve been on one anti-tnf for the past ten years. Its infliximab, but there are other more recent ones, but I think the procedure is more or less the same for each one. I also take 20mg methoxitrate weekly. And I should say that I’m not medically qualified in any way, this blog is about my own experience, nothing else!
Well I started about ten years ago when it was very much in the experimental stages, so the procedure was very cautious and they gradually increased the dosage, monitoring me every half hour – it took four hours to get it + a saline flush in the ‘old days’.
Today, I go in to the hospital every eight weeks for the treatment. It varies, but they do insist on me doing a blood test a few days before so they can be sure you don’t have an infection or anything. Sometimes they ask me for a urine sample which gets dipped for the same reason. This means that when you’re on anti-tnf you get carefully monitored.
The procedure is quite simple, you get checked for infection, then other obs, then a doctor Oks your treatment, then cannulated (the worst bit) and then you settle down for the drip to run through. For me it takes half an hour because they know I tolerate it well. Then a quick saline drip to make sure that we use all the precious infliximab up, more obs and then you’re free.
The impact of the anti-tnf has varied over the ten years I’ve been having it. It took a few treatments to kick in. But quite quickly I did begin to feel better able to move freely, the dreadful pain eased and I can say that I haven’t taken a pain killer for many years now. That must be a bonus. I’m still aware of my RA, I still have a pain in my knee pretty constantly, but its bearable and I have learned to live more or less with it. I still get tired, but am trying the 20 minute zizz which is supposed to be the most efficient way of day-napping.
And I can also say that the methotrexate really makes a difference too. There was a wobble at one point when I reduced my dose because I thought that’s what the consultant said, and it really set me back quite a bit. So however much I loathe taking those eight nasty yellow pills, I do now!
So don’t worry too much about the anti-tnf. In my experiences (hospitals in Oxford and Edinburgh) they monitor you very carefully. I have only once seen someone having an adverse reaction and that was dealt with within seconds. So I really do think that it’s a rare occurrence.
Since going on the anti-tnf the consultant says I’m in remission, which I understand to mean that while the RA is still there, it isn’t ravaging through my body – I hope! But most importantly I am gradually being able to do new things. I’d lost my confidence and stopped taking exercise. Now I’m doing tai chi, can walk a couple of miles easily and in the past year have started to do stairs normally. So I’m rather surprised to be able to say that I can make progress - gain rather than loss!