You have to go for regular blood tests and I was paranoid about, that I go for my blood test on time because I’m thinking if there is any sign of it affecting me I want to know as soon as poss. But some people, my friend goes as and when she remembers, I’m in my diary, at the beginning month I’m at my doctors for my blood tests.

And have you ever had any problems reported?

No, no, I’ve been on it for two or three years now so there’s been, they haven’t contacted me, I see the doctor quite regular, so it’s not affecting me. ‘Cos it shows, it can damage your liver so they check it regularly to make sure it’s not showing liver damage and I make sure I go. And I’ve actually got quite difficult veins as well and they won’t do me, they won’t do me at the doctors surgery I have to go to the hospital and I make sure I do go to the hospital and have it done.

It’s in my little diary – star date blood test which perhaps when I was younger I might not have done that I’d have thought ‘oh what the hell a blood test’, but I’ve become much more responsible about my arthritis as I’ve got older. Because I’ve had it so long you become blas’, and you think ‘ooh’ but as I’ve got older I’ve thought Oh God this is, you know, this is a thing to be careful about you know. I mean I am aware of living life to the full sort of thing and trying to do, making the most, don’t put off today, you know I live for the moment which can be bad really but can be good.

Blood tests monitoring, I have once a month for the methotrexate. Difficulty is now, that’s why the doctor’s coming today is it’s not easy to get blood from me now, because I’ve been giving it so many times. So it’s, I can’t, the nurse, the district nurse can’t do it so I have to have one of the doc, practice doctors, and they, they’re having a problem now. Unfortunately was it last month, I had about, I went for a blood test six times until they managed to get a sufficient sample, which did, has made me a little bit phobic of needles now. I never was but that and that’s not going to get any better because I’ve really only got one good sort of vein and they are lucky if they can find it. That’s one of the worse side effects, I would say of it all now, I hate needles.

And what, what, did you understand what they’re monitoring for?
[cough] Yeah ‘cos I asked them again. I’m always as I say I’m never frightened to ask. I have a booklet where I record my results, which they give me because I take that to my consultant and I’m always, I always want to know why, well you know, this red blood counts down does that matter and they’ll show you the, the range of acceptability and ‘well that’s not, we’re not worried about that’ or if my inflammation is, is high and ESR they measure me I know, I think well that makes sense because I have been feeling very stiff lately. So I do, I understand my results and they always tell me about them so and I keep that and so I can discuss it with the doctor when I see him.

Yeah, well the nurse fills it in when I go for my blood test, she, she fills it all in and she, occasionally there are things they’re not happy about on it, when the results come back and I get a phone call from the surgery saying either theres been some mistake on the blood test, but were not happy about some of the results, will you come back and have a retest. And that’s good, I like, you feel somebody’s looking out for you and they are checking the results and you feel another boost to your confidence in the system. Which I think you do need to feel that when you’re taking drugs which have got nasty side-effects. And I think it’s good that you feel involved and I liked having, I like having the card. Perhaps it’s just my personality, but I like to have it with me;
And have you learnt what the different things are?

Yes, some of the things I have. Some of them are completely meaningless but yeah I like to know what my haemoglobin is, you know, if I’m anaemic or not, ‘cos that is one of the problems with a rheumatoid, you are often a bit anaemic, and I like to know what my erythrocyte sedimentation rate is, that’s good. I like to know what that is and my CRP and oh yeah, I like looking at it, and it’s there to ask the nurse or the doctor if you ever want to. It’s a very good idea I think having that;
And it doesn’t worry you if things go up and down and ‘?
No. But maybe that’s just me [laugh];
So what do you understand by the ESR?

I understand that that is the level of inflammatory activity that is present in my body. Of course, it’s not always just your joints; people do have a high ESR even if they’re not rheumatoids, but naturally if you’re a rheumatoid, it’s relative to your inflammator; processes in your joints and it’s very comforting if you’re taking you know, lots of drugs and your ESR is going dow; to look at it on the card and indeed, if you’re not feeling brilliant, and you feel very jointy and look and see your ESR is going up, you think, oh well perhaps I will go and see the GP, and maybe I need a little bit of an extra something or other just to and I think it’s good to be involved.

Well she phoned [cough] my own GP phoned me up and said, ‘You must come back. There was an abnormal blood test and she didn’t know what it was, whether it was to do with rheumatol, rheumatology or not. So I had to go and have an endoscopy. And a colonoscopy all on the same day. And for the colonoscopy you had to take this terrible medicine the day before and be by a toilet [laughs] all day.

So I still did the child minding and it completely washes you out. And so, you’ve got absolutely nothing in your bowel, what, whatsoever. And and then I went to hospital the next day and, having had nothing to eat and they give you Pethadin so you don’t really feel it and because I was having both ends, they give you more of it. So I didn’t feel anything. So they looked down the throat and up my other end and that’s the only time I was aware, I could feel this stuff poking about.

It took about half an hour and there was absolutely nothing, they couldn’t find one thing wrong with me. So they put it down to anaemia, because of the arthritis. Which though it didn’t, it proved that there was nothing wrong inside it meant it was, when they gave me tablets and an anti-inflammatory actually, they work don’t they badly on your stomach if you’re that susceptible for indigestion or ulcers, I remember so, when they gave me anti-inflammatory they knew that wouldn’t be enough, effect and it meant when they gave me the sulfasalazine they knew that one side effect I wouldn’t have would be anything wrong with my stomach. And as I never suffer from indigestion either, that was all right.
And how quickly did they organise that?

Really quickly. I’m, I’m sure I said, ‘I’m going on holiday in 3 weeks,’ and they said, ‘We want to do it before you go. Because they were worried, so worried about the blood count. So I had it in two weeks which, you know, NHS that’s pretty good going, isn’t it?

Yeah, certainly X-rays. I don’t think I’ve had an ultrasound but I’ve certainly relatively regularly have X-rays just as a means to find out where the sort of the feet and the hands are, how they’re really sort of progressing or sort of deteriorating really perhaps in a way, probably once a year perhaps. Probably now even less than that because I’m only having the six monthly inspections so probably perhaps go a couple of years before you, you have them. But they do, they do keep monitoring that side of things just to see how they are.
Does it bother you having sort of that regular X-rays, that many X-rays?

Not really because it’s interesting obviously to, to see the state of, you know, what, what is actually obviously going on. I mean you don’t, you can’t really feel the deterioration that you can see obviously on the x-rays and obviously you know that things are hurting but you can’t actually see the way that things are changing and the joint’s deteriorating that much so it is interesting really in that respect just to, physically see what’s going on. It may not be quite so nice to know what’s going on but you do actually, you know, see and can understand a little bit more.

The hospital wasn’t right, it was the things that they were saying, I knew what tests I should be having, not what type of tests, but I knew you were going to have regular tests, there was blood tests and bits and pieces and X-rays just the general MOT of what was going on with the body and this just wasn’t happening and I was going through such regular flare ups, and I thought somethings, it was as though there was a flow to it and I said to the specialist one time theres something not right, I don’t normally have them with this regularity or this pattern that was developing and she said ‘Well we don’t need to do anything because we can see the damage is happening by just looking at your hands’, and I thought that’s a bit odd, because normally they would throw you into the X-rays pretty quick and there was no blood tests done but she said well the next time you go through one of these well have you in and well assess what’s going on.

So I went through one pretty soon after and gave her a phone call and I thought here we go, somethings going to happen and they said, they just made an appointment for me to come in and see her within, it was I think a couple of months, and I thought no I’m not happy with this, somethings not right. So I spoke to a friend and she said well she said ‘theres a good specialist not very far away, get yourself into see him.

So I went across to see this chap and I thought, ‘Oh you know, and it was just the guilt of having to move specialists again. Anyway I saw him and hes, I’ve been on the majority of what I would say the secondary drugs and he said right were going to go and X-ray all your joints and see what’s going on and he said you’ve got a choice of a couple of drugs really and one was the steroids and one was, I can’t remember the second one, and so I went off, had the x-rays, came back and he took me into this little room and the nurse was there, shoved up these X-rays and I thought well that’s not me, hes got the wrong X-rays here.

I could see the sort of damage going on with the hip area and stuff, and I thought, no no that’s not me and I said to the sister I said ‘Are you sure these are the right x-rays? It doesn’t look like my X-rays’, she said ‘Yes’, and I said ‘No, they’re not, they’re not mine, and I was waiting for somebody to say sort of say it’s a joke or something and she looked at me as though to say shes not getting this, and he came in and he said, ‘Well and he sat down and he was really really nice about it, and he said ‘Right were going to have to go through and replace a lot here, shoulders, elbows, hips, knees and wrists, and I’m thinking ‘Na’, [laughs] I thought I know I’m in a lot of pain and I know I can’t really move around a great deal at the moment but and I thought no hes serious.

I got a cancellation very quickly. And I had to phone to go through a medical questionnaire on the phone to validate the appointment that A) I could make the time allotted and all the rest. And I remember laughing and joking saying, ‘Well I don’t know what to expect. And they said, ‘Well let’s go through this questionnaire and then we’ll talk about it. I said, ‘Well can I eat? Can I drive? you know and this sort of thing?’ She said, ‘Oh yeah, yeah, yeah, you’re arms won’t fall off or drop off.

And I went off to have my scans and I got there at five minutes before my appointment so I then filled out a medical questionnaire confirming what went through signed the disclaimer and all the rest and I was escorted, I went to sit down and I was dragged straight in and it’s really funny because they had this most gorgeous mural on the wall which was a very relaxing ocean sort of scenic view, which I totally missed and looked straight at this machine and I went, ‘I’m not getting in that’, [laughing] which was my first reaction, which was a bit scary. And she said, ‘What’s the problem with it’? And I said, ‘I’m claustrophobic’ and she said, I said, ‘I drive with the windows open’ and she said, ‘Really?’ and I went, ‘Really, I’m claustrophobic. So anyway, she said, ‘Well just try it.

And I got into the machine and I was given a radio mike so I had constant, we were in constant contact, and the only thing that I wasn’t aware of because of having the shoulders done I had to be right in the centre of the machine and I was really quite scared. I was also, because of the magnetic thing, I’m thinking, ‘Oh my God, will all my fillings come out’, and things like this. So it was the first question I asked and she said, ‘No, no, trust me. It’s on your, we’re turning that bit off. It’s on your shoulders’, you know and I’ve I’d already said I’ve got no pins or plates in me or whatever, so, that was fine. But I wasn’t geared for the noise and I just, she said, ‘Just find someway to relax’, and this is the middle of August I went.

So I started off doing a Christmas shopping list to get myself through it because I was really, really feeling quite claustrophobic and I was like forcing myself to relax. And I can remember feeling I was getting a bit panicky, I was almost having an anxiety attack at one point and I’m thinking, ‘No, no go on to thinking of everyone’s name beginning with A’, and then I went on to B and all the rest of it. Anyway I’d been in this machine for about 45, 50 minutes and I didn’t even realise. All I was focusing on was trying to relax, trying not to think about the fact that I could see the, the thing and you know I couldn’t try and sit up.

I then got dressed and I wasn’t allowed to leave until they’d made me tea and had tea and biscuits. And ‘Are you all right? Are you comfortable to drive home, you’re not” and they you know, they really are, before, during and afterwards was really, really good. And I was well impressed. Not 100% sure I’d want to do it, knees, ankles, yeah I’ll think about going back in there, hmm, I’m not sure because now that I’ve done that it was quite uncomfortable.