People are scared by drugs trials or these new drugs on yet nobody knows. it’s not tried and tested, you know, trialed, but it’s only guinea pigs. If you don’t put yourself forward to have a go then how are you going to get results or how are you going to know if it does work.

And I just think when you’re in a situation where you are confronted with pain you will try anything if it means you will, it gets some relief. And I just think, don’t be scared to have a go because the positives outweigh the negatives.

And so at work you haven’t had any problems?

No I’m ok. As I say for this last six months whenever, how long I’ve been on, since April I haven’t made any adjustment in work at all. So I’m quite happy [laugh]. it’s just better for me because, you know, everyone worries about their jobs in this current climate and, you know, the fact that I’m not taking time off work has got to be a bonus.

So that is at the back of your mind the possibility because of the current climate that if you start taking time off because you are sick that might prejudice your job?

Go against me, yeah.

Yeah I understand. So you main worry is, you main concern is what will happen if they take you off the golimumab?

Yeah whether I will start getting more flare ups more regularly due to the weather. it’s going to be going into winter which is, I’m prone to get, you know, more attacks in the winter because the cold weather sets them off.

And you know it’s just going back to again relying on somebody to open milk for me or bottle tops, car door, you know, my car door. it’s all simple things even changing the gears on the car. You know it sounds something straightforward but sometimes if I have flare ups it lasts for a few days so it makes it difficult. Then it’s difficult getting to and from work. I’d have to go get the train, you know, which is a lot, takes longer to get into work than what it is. You know, I can go. If I’m not feeling great I can come home in the car but if you’re having to rely on public transport it’s longer for me to get home.

So if I have to summarise I would say that your main concern now is

What happens next?

What happens next?

Am I going to go backwards?

Exactly.

it’s just. I’ve come so far or I feel so much because even everyone says to me, Oh, you know, you’re just so much better with that. You know, people in work and that’s because I used to be sitting there and holding my wrists all the time because of the pains. You just get on with it but I don’t have to worry about getting on with my job, getting on with my day because I don’t, it’s not, you know it’s not present all the time. I can forget about it. You know, sometimes you forget you’ve got it [laugh]. Then, you know, you’ll get an odd twinge and you go, Yeah maybe I shouldn’t be doing that.

But because I’ve been so well on it just worries me that, Am I going to go two steps back or is it going to go worse than it was before. If you know what I mean, it’s like a, because you’re taken off it will it aggravate things, speed up even faster. I don’t know. it’s just things you worry about.

And one of the concerns is the job situation?

Yes.

Ok.

Yes, yeah because in this climate it’s happening in our. I am part of corporate services which my bosses are down in [city name] and they are already having a big restructure of everyone’s jobs so nobody. I know we’re in the North but it’s again everybody is under. You know, nobody [everyone] is under scrutiny, you know, scrutiny and it can be anyone next time. It could be North or them.

Obviously

Have you looked on the Internet for information about?

Yeah I’ve had a look [laugh]. But there’s all sorts. To be honest I think if you had every single supplement, every single, you know, take cod liver oil for this, take Omega fish oils for that you’d be rattling and you’d be taking that much that nothing will be working so it’s being sensible about it.

You know, I do read it but I don’t necessarily go Oh that’s a new thing for rheumatoid arthritis I’ll have that. I’ve got to try it. Because I do think that, you know, if they were that marvelous there wouldn’t be any need for medication would there? You know some people it will help and others it won’t so I tend to not read too much into it. it’s just like having a base, you know, a general commonsense approach to, you know, fruit and vegetables and healthy eating than needing all supplements and things.

But when you go onto the Internet do you Google things or you go to specific sites?

Well yeah it was, it’s something, it depends. If somebody tells me about something like somebody told me rosehip, some kind of rosehip oil or some kind of supplement with rosehip oil in and something that is supposed to be very good or was it cherries? Somebody said cherries and things like that. So, you know, I tend to have a look but I won’t follow it up and go, Oh I must buy that. You know I’m not that way inclined.

Which type of sites did you visit?

Just it was, it was just Google. I just Googled. Was it iron deficiency? I’ll just click them up or, you know, go through a couple of things.

Ok.

You know, like not at a particular site. it’s just there.

So no medical sites or?

Not really, no it’s just
NHS or?

No not really.

Or charities?

No.

So have you been in touch or have you heard about sort of Arthritis Research UK, Arthritis Care?

I’ve heard of them because are they the ones that do the leaflets for the hospital? Yeah as I say I’ve got handfuls of their leaflets upstairs. I always when I go to the hospital I always see if there are new leaflets there. I will pick them up. The one about mobility, you know, one’s about exercise and eating. There’s, I’ve got them all. If there’s anything new I tend to find at the hospital it’s pretty good.

I’d say it was about 12 months, just under 12 months I’d say on the treatment. And then, you know, just a review they can’t give me, at the time they couldn’t give me any more methotrexate. I was on the maximum I could be given. So it was to, you know, to be, I think it was. The trial was coming or something. I don’t really know. It was just, Would you consider that?’ You know if
They offered?

If you were suitable. Yeah they just said, We’ll put your name forward’ or, you know. And then I got, somebody got in touch with me.

So it was just basically because they couldn’t give you any more of the methotrexate?

I think it was just because there weren’t, it wasn’t settling when, you know the, it didn’t seem to be settling, I mean something to do with my blood I’d understand, my white blood cells or whatever it was that wasn’t. It was still active.

Obviously you’re still, I still get odd days of I know if I’ve done too much lifting because we do, you know, in my job there’s a lot of paperwork and we deal with files and so they can be quite thick. I do tend not to do any lifting if I can avoid it but just simple use of a computer sometimes the mouse, if I’ve done too much then it will hurt. You know it will start paining me but that’s. You know that’s normal but I’d say a 100% better with using the golimumab I’ve got more flexibility. I quite, before I was on that I was really, it was tight. My joint was really tight. Well I can bend.

Ok so it’s more flexibility

Yes and I think that like because of the swelling, the swelling’s gone right the way down. So I
it’s ok so there’s more flexibility and no inflammation.

Yes. Yeah but it’s the inflammation and the flexibility that I’m most pleased with.

And what about your feet?

My feet are ok. See I tend not to wear a tight shoe anyway. I’ve got. See, see the marks on [showing foot] my foot but that swelling has gone down on my feet as well so, around the toes but I don’t get as much pain. Sometimes when I used to be walking for, walk too far then, you know, feet tend to ache. And getting up in the morning I do stuff like, it’s a bit stiff until you get mobile and walk but I’m fine. I’m not as stiff in the morning.

So for how long have you been on the golimumab treatment?

I think, well I can’t remember. It must be I think about April. I think it’s about April/May I might be wrong but I’d say
So about six, five/six months?

Yeah, yeah.

And for how long will you be on it? Do you know?

I think, well I know I’ve got one more injection in the fridge and I spoke to the hospital yesterday and they were hoping that I would probably get another one for November but after that they have written to the, is it the PCT to ask but I think it’s to do with budgets that I might not be able to carry on with it because it has something to do with the scoring of. You know it, I think if you’re a thousand, marked the way they work it but if the more joints which are in agony, you know, that you’re affected by then you’re more likely to stay on it. Well the fact that it’s done me good it doesn’t s