Interview 16

Age at interview: 63

Age at diagnosis: 36

Brief Outline:

Diagnosed 1977 after shoulder pains. Diclofenac retard 100mg/day, Methotrexate 15mg/week & 5mg/day folic acid. Partial wrist & 2 finger joints replaced, thumb tendon repairs, 6 toe joint operations, ankle fusion & a back operation (not due to RA).

Background:

Retired physiotherapist, married with two adult children. Part private healthcare (latest surgery).

Has complete faith in her doctors and has never felt a need to get involved in treatment decisions.

I feel if I'd questioned it [treatment], I would have had a choice. But I have complete faith in the people that look after me. I've never felt any need, if somebody says to you look this is a hard drug, this is methotrexate, I think you should take this, or try it on this dose, you gonna have to have a blood test every four weeks 'cos I want to monitor the this, that and the other, you feel confident about that 'cos you know in four weeks you'll have a blood test and when the results come back, it's gonna tell the rheumatologist whether it suits you or not. I, the way it's been presented to me, has been the correct way, and I've never felt any need to say why or, I've just thought, right, if you think it's a good idea, it's always been adequately explained to me and I've been quite happy with everything I've taken. Maybe that's not a good thing, but it suited me fine and it's, I've not been let down.

Took part in a clinical trial of cannabis for inflammatory pain.

I've recently just finished taking part in a trial for the use of cannabis for the relief of inflammatory pain in rheumatoid arthritis and it was a most interesting study. I was required to take the drug spraying it under my tongue, which tasted disgusting. No chance of becoming a drug addict, doing this horrible spray, it was the, I presume it was a spin-off from the use of cannabis with MS, and the researcher seemed to feel there is some mileage in it for a rheumatoid, which would be wonderful, if it did help somebody. 

You don't feel any different when you take, but you have a lot of blood screening ECGs, heart you know, weight, very intensive and I think probably from the blood screening they will get some indication then as to whether it actually affected you in that week, unless I ask I don't think I find out any results but the clinician that looks after me, as far as my rheumatoid, was actually involved in this study so I think if it was appropriate for me to ever take it, although it's still in a very crude form, presumably he would offer it to me. But I would suspect it's probably for younger more acutely inflamed patients than me. But I was very happy to do it. It was most interesting.

You said you were happy to do it, you know, were you provided with, did you have to weigh all the pros and cons of doing it?

No. There seemed to be no risks. There was very good care, plenty of contact. You didn't have to be, 'cos you couldn't drive after you'd taken it and you know, you didn't have to provide any accommodate, transport, they, you know, there were no sort of costs involved, everything was covered if you needed it to be, and as I mentioned having a daughter, I felt it could be very relevant for her, if it was of use in the control of inflammation.  

But did you feel any effects from it?

None at all, no. I thought during the week, that one of my grumpier joints, was a little less grumpy, but it's a transient grumpiness anyhow. It went away but then it came back while I was taking it so, I have a, I didn't feel that, I didn't feel any change at all in me, no.  

Have you taken part in any other research?  

No, I've, not in taking a substance. I've been just answered questions to another research nurse but that was just part of the clinic, the rheumatology clinic, and then this present research. But no I haven't been part of anything else.

Slow release anti-inflammatories help with early morning stiffness and the working day.

I take a slow release diclofenac and the folic acid.

Is that an anti-inflammatory?

That's an anti-inflammatory, yeah, yeah. And I have had periods where I've taken that, I take that at nighttime and that's, I think it takes about 14 hours to slow release. And when it's been nasty, grumpy, joints then I would take some four hourly diclofenac during the day but I haven't needed that for awhile and I've had lots of different anti-inflammatories, some have suited me and some haven't but diclofenac, it really does suit me so.  

Can you tell me about the slow release anti-inflammatories that you've had?

Yep, well I didn't have them when my first, when my rheumatoid was diagnosed to begin with. So you had the usual four-hour spaces between the drugs and it wasn't nearly as effective, bearing in mind the problem that a lot of rheumatoids have of morning stiffness. If you take a slow release drug they take about 14 hours to dissolve completely, I think, and so you take them last thing at night, always with milk or food, and then they're popping away very nicely all night and cover you for morning stiffness bit, and start to wear off usually sort of, early to middle afternoon and, if you're, if you're ESR is up, you can feel it where it wearing off.

But there's no reason why you couldn't take a smaller strength pill, to tide you over then, to when you take your next slow release. I'm in such a controlled state now that my ESR is very low, which I check it on my card that I carry around with me, which I like having and so I'm not aware of the drug wearing off at all. Having said that, it makes you feel, perhaps you would like to come off the drugs and now and again I say to my rheumatologist, 'oh do think I should, could come off the drugs?' And he says 'no, you are controlled on these drugs and this is how it's going to be' and I accept that completely.  

And yes the drugs, the anti-inflammatories, I feel are very significant in the control of the pain in a rheumatoid, a great innovation drug for the drug control, the pain control.  

And how, when you were working, you know, how did that affect, how you got through the day?

Yes, well I did begin to feel it wearing off, you know, as I say, middle, beginning to middle of the afternoon, but the majority of my working day, my heavy, you know if I was doing lifting and was coming to an end then, and most of the time I could manage at home just doing sort of, like domesticy things when I got home, I could manage until I took the next slow release drug but if I didn't, I did have drugs there, small strength capsules to take if, if I was having a, a more uncomfortable period. But for the time being those days are over, so but you never know with rheumatoid, you just enjoy the good bits [laugh].

Intensive physiotherapy on her hand after surgery really helped.

It was very hard, the physio is very hard after lots of this hand surgery. But it had to be done and I, after a lot of my hand surgery I was discharged home for awhile and then I went back and lived in a sort of in accommodation near the hospital and went every day for all day physiotherapy because I lived rather a long way from the hospital so I had Monday to Friday physiotherapy and that was the, that was the intensity of it and it was brilliant, really brilliant.  

Do you that's unusual  or do you think that's'?

I think that was a, unusual because of the hospital where it was done and the surgeon who was a hand surgeon, he had this marvellous postoperative support group of different therapists. And I mean as I feel it's a waste of money if you don't get the correct support after the operation you know when it's reconstructive surgery or it needs to be you know, and you do need somebody to help you saying, 'yeah you can that', but you think,'oh no I can't.' You need a professional to say, well I think you can do that and it's not gonna snap or do something horrendous and that was brilliant, yeah, brilliant.

So even with your sort of background knowledge and you would be sort of in a position to sort of tell somebody else that, you, you needed somebody to sort of  [I did yeah] motivate you?

Yeah. These, these girls, or well they were mostly girls, were specialists though, they were say hand surgeon specialists and you know so as an ordinary physiotherapist, I didn't have that specialist skill and I needed, you needed that, you need somebody to give you confidence.

And what, what for, was it exercises or '?

Yep, exercises.

Ultrasound or something like that '?

Exercises, yep. We had a little bit of ultrasound but it was mostly exercise, yeah, do-it-yourself, get on with it and it was each day, it was monitored you know, this is the progress you've to make today. Whoa, oh dear. It was very hard but it was marvellous.

Understands what her blood monitoring is for; having a record card helps.

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 there's been some mistake on the blood test, but we're 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 inflammatory  processes in your joints and it's very comforting if you're taking you know, lots of drugs and your ESR is going down  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.

An occupational therapist visited her home and provided some very useful equipment including...

I had some yeah, but the occupational therapist was, came to my house when I had my wrists replaced or before I had them done and a brilliant service I had from her 'cos things like, well even before I had the surgery, yeah before, because my hands were so sore I couldn't turn on the taps and oh phwao it was hopeless and so she brought all sorts of weird and wonderful things. 

I think probably all of which without exception I used after my hand surgery and found it very useful. I don't think I did very much when I was in hospital. It was, it was a home, a domestic service, support service that they offered which was very helpful, very helpful.  

What sort of things, what gadgets did you have?

Well she first of all she left me a little trolley that I could, because I couldn't carry anything when I'd had my wrists done so I could bring something from the kitchen into here, just a little tiny, like a tea trolley, but it was higher than that. I had a gadget for sitting the kettle on which tipped the kettle, which was great. 

The taps, [pause] I don't know whether I should tell you the next one [laughter], she left me a washing-up sponge to wash my bottom with [laughter], sitting on the bidet, but better delete that one!  I, yeah I think that was probably but they were and of course the taps were changed, oh that was marvellous, nothing you know, you can't turn on the tap in the morning, oh it's awful. But that was, those were the main things.

Did you actually change the taps to..?

They put new taps on so they had levers, so I didn't have to turn them.

So you can still use them?

Still got them. Yeah, marvellous, yeah.

Had both partial wrist replacements together and although it was very restricting for 3 months...

I had my wrists partially replaced and that's been terrifically successful. I think there were probably given a life span of twenty years and I think that twenty years is up but I'm not thinking about that. They been very successful, they're very strong and  I've got silastic in there, which is a mixture of silicone, and plastic and they're strong and been very good. Don't move much but very functional. They don't hurt, that's the main thing. 

Is that the main problem, you know, prior to going in for surgery?

Yeah, it's the pain, yeah, localised pain that couldn't be controlled by drugs, can't, you, oh I needed to wear splints to work in 'cos I couldn't bear to move my wrists. So you may as well get rid of the pain. You're probably gonna get a stiff wrists anyhow so get rid of the pain and have them stiffened a bit and you very soon learn to accommodate that. You do all, you just your body helps you very quickly. You think, ooh can't move my wrists, won't be able to do this but you do, there's very few things that you know, just your other joints accommodate it and you maybe do things in slightly different ways but you can manage fine, especially if they don't hurt, great.

So you didn't need your splints after that?

No, no.

And how did you sort of approach, I mean you know now it's been successful but can you remember sort of how you approached the surgery, were you, how did you feel about going in?

Scared to death. Yeah, I was scared to death. I was and I was very anxious about the post-operative care because for something like four weeks, I could clean my teeth, and lift a half, I could lift a cup of tea, clean my teeth and wash myself, that's all I could do. I needed help getting dressed, oh I couldn't lift anything. I needed help getting in and out of bed. Oh I was hopeless. And I mean that, when you know, that when that's ahead of you, you think, oh that was depressing that bit. But I had lots of help. People helped me and it was so worthwhile, so, it was so worthwhile, yeah, fantastic.

So when you went in for sort of second and third operations, how did you feel?

Yeah, well  I don't think any of them were as debilitating post-operatively as the wrists, because I opted to have them both done together, to get it over with, was maybe a bit heroic. But I think it was a good thing to get it over with because it was a sort of three month recovery time for each wrist, you know one after the other, or just have them both done together and so they said, well if you're sure you can cope. I thought well I'll have a go and I did manage but it was hard work. But it was well worth, it was so worth it.

Some form of swimming is good but moderation and pacing are key.

I will swim again and the warmth of the water resembles a hydrotherapy pool. So if you do your gentle warm-up in the, just stretching your joints and your muscles and then I could, I would swim twenty lengths or so, if I was feeling good. But not in a competitive way, a relaxed stroke, plenty of rests and  then just some gentle stretching at the edge before I got out and it's brilliant. I think it's, whether you like swimming or not, I think, I used to take a friend of mine who also had rheumatoid, who couldn't swim and she walked under the water for maybe 6 or 7 lengths, just doing a breast stroke movement with her arms.

She couldn't get her feet off the ground but it was wonderful exercise for her in the water. And so I feel there's some, a bit of swimming for everybody really, as though whether you like it or 'unfortunately a lot of people find it very boring to swim. But if it's a means to an end, to put your joints through a good range of movement, I think it's an excellent thing to do in an lov, if you've got a good warm pool. I'm a great believer in, in that.

And having done a swimming session would you then sort of feel any effects of it, in terms of tiredness or feeling better or'?

No. I'd feel good that I'd managed to do it because of my personality. I'd think, well, 'I've done that, I've achieved that'. I wanted to be like everybody else. If the next day I felt stiff, then I thought 'well I'd overdone it' 'cos I always counted the number of lengths that I did so that I was in control. It's like when I walk, I try and walk for a period of time, you know, at a sort of pace where you get your heart rate up a bit, otherwise if, if you feel stiff the next day, you think, 'well how long did I, how many lengths did I do'. 

So I think if you're gonna get a therapeutic benefit out of it, you need to be quite careful with your exercise, 'cos if you over do it, there's no point, if you're just causing another inflammation I mean the trick with rheumatoid is to try and get the amount of exercise just right for your joints so that you keep the range of movement that you've got but you don't go into the over exercise bit where you cause an inflammation. But you know in, you get to know your own body and it's a, you have to keep working at it all the time [laugh]. 

The Dong diet was hard to follow and didn't appear to help her joints.

Well I tried, I tried the Dong diet. You, you can't eat any dairy produce. You can't eat any red meat. You can't eat any fruit. You can't eat anything with additives. Then, can you think of anything that you can eat? [laugh] You can eat fish, but you can't have any sauce or any milk or no dairy products at all.

So you could have fish and vegetables, but with nothing on them which obviously contained any dairy products. You could eat nuts and that was about it. It was a mad diet and I spoke to my rheumatologist and he said well, it won't do you any harm but it won't do you any good. But if you feel that you like to try it, you try it and I did. I tried it for six weeks and it was awful. Just imagine - what you will take for your packed lunch then. Well I can't have any bread, 'cos you couldn't have anything, well, could have any flour? You could have flour, I can't remember whether you could eat flour, wheat or not, now. But I mean it was hopeless.

So you couldn't have an egg sandwich or you couldn't, I remember taking a tin of sardines and a packet of nuts to the hospital for my packed lunch [laugh]. Well, you can imagine, [laugh] well if I was to say that I lost a lot of weight and my insides were completely at war, for about two months after I stopped the diet and my joints were just the same [laugh]. But at least I'd tried it. Some, it worked for some people I think. 

I never actually met anybody but well, you think if it means you don't take the drugs, you can try the diet. I thought, oh I don't know how I was gonna manage long term on this diet, mind you, but I haven't tried anything else, no. That was my one flirtation with an alternative [laugh] and I went straight back on the hard drugs then. I thought, no I'll just take the drugs, thanks. 

Patients may forget what they have been told so it helps to have the phone number of a nurse to...

What I think is not always taken into consideration is that people are very anxious when they go to a rheumatology clinic or whatever, and however hard you try to listen, I think people forget what they've been told sometimes. And recently I've been to a hospital, which I was extremely impressed by, because on my initial consultation with a surgeon, I was given the name and a telephone number and hours that I could contact a member of his team, a nurse on his team. So that when I got home, and I thought to myself, what did he say about that? How long was it? What would I be doing after I'd had the operation? I had a, a name and a telephone number and days that this person worked and the hours that I could ring and I thought that was fantastic. I don't, for me I probably wouldn't need it, but there are lots of people that I think need that sort of service 'cos you're obviously anxious when you go.