Interview 17

Age at interview: 53

Age at diagnosis: 20

Brief Outline:

Diagnosed 1970. After early years, had 15 yrs when relatively well on NSAIDs. Flared up 99/00. Methotrexate 25mg/wk, daily Rofecoxib 25mg, Tramadol 200mg, anti-depressants & HRT. Awaiting 1 hip & 2 elbow replacements, wrist & finger straightening surgery

Background:

Partner in farming business, married with one adult child (born after RA started).

Discovering a stomach ulcer.

Well eventually I got sent back to the same hospital that I'd originally been to, in fact I was in quite a state at the time and they sorted me out with methotrexate. And they also realised that I had an ulcer from the anti-inflammatories that I had been taking, which also got sorted out.  

It's gone, yeah. That was purely the anti-inflammatories caused that. But I didn't know I had it. I didn't have any reason to think I had but apparently the anti-inflammatories that cause it also hide the symptoms of it. So you probably don't know you've got it. Well most people don' t know realise they've got it until they actually start to bleed. But I was quite lucky that they found that out beforehand.  

But you're back onto anti-inflammatories again now?

Yeah, but I'm also taking a tablet to help the lining of your stomach. Another tablet [laughs]. So hopefully that won't happen again.

Sees the specialist nurse before the consultant each time she visits the rheumatology clinic.

I see her every time I go, which is three months and you also see the consultant. She sees you for about 20 minutes and goes through everything and what's happened to you and how you are and then the consultant sees you for five minutes well she tells him, you know everything that she's got from you and what they're gonna do next and it wasn't like that when I started but it seems to work better because you get longer you know with somebody, where as you only didn't have so long with the consultant, where as the system as it, it's now I think it's better because there's more involved and it's sort of she sort of examines you every time you go, whereas the consultant didn't, he just talked to you and, but I think it works, it's better.

And you feel able to talk to the staff either the nurse or the consultant?

Oh yes, no I mean they're very nice. I don't have any problems with the, you know, very approachable and ask what you want and you get an answer, you know. 

Was shocked at how many operations the surgeon thought she needed and wished the wait were shorter.

Yes, Well it was a bit of a shock, bit of shock about the arms and the elbows because I went to see a surgeon to take off nodules on my elbow, which was the reason I went to him, was sent to him, and once I was there he said, oh yes, we can, we can do this, we can do that and we can give you this and you know, I was sort of shell shocked when I came out of there, thinking oh I only went in to have [laugh] and he's gonna make me bionic sort of thing, you know, that's how I felt. But after thinking about it I thought well you know, you're not going lose anything by it so he seemed pretty sure that it would be an improvement, but then they send you away and you have to wait a year. 

I was gonna say so how long have you got to wait?

I saw him last March and apparently you have to wait, you have to be operated on within a year, well the hospital's policy apparently, so the year is now up and I'm waiting to hear when the first operation is gonna take place. Apparently they're gonna, it's gonna be three, for the elbows and the hands, it's gonna be three operations, with six to nine months between each, each operation.

I think that anybody who's going have an operation has got concerns about it. I will just be glad when it's over. It's the, it would be fine if like you could go and they'd say yes you're going to have an operation and they do it within a month so you haven't got, I think the worst part is having so long to think about it. Because you get yourself, you think, 'Yeah right I'm going to have an operation' and then it just goes on and you've got more time to, to think about it and you have more time for people to say 'Oh, so and so went through a terrible time'. And, you have to hear all this and you really don't want to hear it. But, no, just, I'm optimistic about it and hope it will be better. 

Previously she had experienced joint flares but then a severe whole body flare 'crept' upon her...

Well apparently, yes I have, well at the start it was in different sort of joints they would flare but apparently what I experienced several years ago was an actual flare which I'd never experienced before and didn't realise what it was. But that was a, a type of flare then. And it's horrible. Especially when you don't realise that that's what's happened to you and you think, you know, you've got something else terribly the matter with you as well as arthritis but luckily, you know, it wasn't. But no it's not pleasant.

And how long did that sort of last or was that until the drugs started?

Well it's, yeah it was actually sort of, as I've said, it was a sort of creeping thing. It started, I don't know really how it, it was just, that you couldn't do, it wasn't all in one go you got up and you thought 'Oh I can't do this', it was sort of each day you seemed to be able to do less sort of thing. You know, and as I said, you kept thinking 'Oh I shall be all right next week'. But that didn't happen until actually, all, I went in hospital and all the drugs kicked in  because when I had the, they found I had the ulcer I had to come off all the anti-inflammatories and it takes about 12 weeks for the methotrexate to start kicking into your body. So for some time I was on nothing. 

So actually, I'd had a pulse and felt better and then until the actual methotrexate kick, kicked in again I didn't feel so good again. But once that started to kick in it was, it was, you know, I felt better. And that's the time when I realised. oh, you know, realised how poorly you did feel until you felt better.

So oh it, you could live with it, well you have to live with it anyway but it wasn't too much of a problem for I'd say about fifteen years and then it gradually, I'd say crept because some people I've talking to have said, oh well it came, my wrist locked and my arm locked when I was mowing the lawn sort of thing and that was it. But my wasn't like that, it was a creeping thing, is how I can best describe it. And you just felt rotten, you know, it's as though you had the flu. You just didn't ache in one joint, you ached all over well that's how I felt. You know, you coughed, you're ribs hurt and things like that but which was strange. 
 

Has taken an anti-depressant when she was in a severe flare and whilst waiting for several...

Yes. I'm taking them [anti-depressant tablets] now and I took them back when it, you know, I was, before I went to the, the hospital I was on them and then when I started feeling better I came off but then sort of last year I'd got to this point where, because I've always thought I'm going to fight this I'm not going to let it get to me and, and then it is, you know, I was waiting for operations for this and waiting for operations for that and it just all got a bit. 

You know, every time I went to the hospital you've got something else, you know, they told me I'd got osteoporosis and oh and you've got to have an operation for this and, and it just all got too much. So my GP put them, me back on the anti-depressants and I've been fine ever since then. But I hate really thinking that I've got to take anti-depressants, but then I think again, well if it's going to help why worry about it. But you know, once you start getting depressed it's very hard to get pull you back, pull yourself back out of it, but no they help.

It can't be nice waiting for all these different things?

No, it's just seemed to be one thing after another you know. 'Oh know, what else is are you going to tell me?' sort of thing, you know.  

You see, to me that is almost like saying you're not coping with it, having to be, take, but I suppose that's silly really to think like that but 'cos everybody likes to think they can cope, don't they? But then, you know, if you're going to feel better by taking them, you know, its silly feeling like that isn't it? No, I certainly feel better since I've been taking them. But perhaps when everything is done I shall be able to come off them.