I think. We see eye to eye but we, like I say I'm really pushy so I've always pushed for things and I've tried to push it like and he always has to control me because you have to be on like, you know, before you can move on with stuff you have to be on a certain drug for a certain amount of time and I've always been like, 'Well this is it, it's been three months, two days, this hour, right now, give me the next thing because this is obviously doing anything.' So it's always had to; maybe it's more parent/child or parent/teenager that's probably the best way to put it, you know, I'm stroppy and I'm going, 'Well it's not working, I want to go to university, I feel like crap,' and he's like, 'Well you've got to give it time, this takes time, body takes time,' and it's like, 'mmm', you know, 'I want this now,' kind of, you know a little bit like a child
It may not be the case for you though that this was, it may be that your discussion was more open because you were aware of four different, you know, medications or you'd; the difference between biologics, Anti-TNF's, the DMARDs and you listed them there. So were you in this position where you could negotiate or become almost a partner in decision making with your treatment?
Could you explain how that happened and what is what like then?
So they tell you, well I'd, so I went on methotrexate and I was put on a really low dose because you've got like your body of stuff like that straight away. And then so obviously started collecting leaflets and stuff and it was a, I knew the kind of, I'd made myself read and I understood what DMARD meant eventually and understood the kind of groups of drugs within that and when it came to kind of let's up the methotrexate, let's, you know. And I was happy to keep going because you know, you need to get to a certain point with it and give it a good three months before you're supposedly supposed to see stuff and it was getting to the point where I wasn't seeing anything and I was like, 'Well, you know, there's this and then there's this and then there's that, which one do you want to put me on?' and it was more of a, at first because I was seeing, I was just, you know, that other nurse to start with and she was a bit reluctant and she was like, 'You need to stay on the methotrexate,' and I was like, 'I'm not really happy,' you know. All well and good you're saying that this will work. Cool but you can put other things with it. It's one of those drugs, it's designed to be used with other stuff so I basically ended up; I was lucky enough to have my consultant appointments quite close together at that time because obviously it was so early on in the diagnosis and that was when I mentioned to the consultant that you know, ‘There's other drugs, give me other drugs,' you know trying to worry him with the amount of painkillers I was chewing on a day and it was like, 'OK well if this is really how much you're taking, this is what's going on and oh OK so you have had six steroid injections in this amount of time, oh god.' It was a, 'Yes let's start,' and then from there it's always; I wouldn't say I'd been in control because the biologics, I didn't really know much about them if I have to be honest and it was only when they offered them and they started trying to get the money for them that I understood what they were and that was kind of my first year of uni and I was a lonely first year and we hadn't really done much immunology so I didn't understand all the stuff. And I was little bit, I was quite apprehensive ongoing, of actually going on those drugs because they were, well it was as NICE were overturning the rules for them on clinical trials because they'd been so effective that they decided that they were going to stop trials shortly and start actually issuing them as dru