Interview 19

Age at interview: 53

Age at diagnosis: 30

Brief Outline:

Diagnosed 1980. Early treatment NSAID, pain killer and steroids. 9 operations e.g. joint replacement, neck fusion. Various DMARDS. Currently on Anti-TNF Infliximab/7 weeks. Methotrexate weekly, Prednisolone, Rofecoxib, hydroxychloriquine daily.

Background:

Self employed marketing consultant. Married with one adult child born after diagnosis. Founder of National Rheumatoid Arthritis Society (NRAS). Chair of charity and active campaigner to raise awareness and increase standards of care for people with RA.

Describes her mother reaction to her RA and her concerns for her own daughter.

(Her father had RA when she was a child.) And of course, as young children, and then teenagers and so on, you don't really think about you know what your dad's doing or how he's getting on at work or if he's struggling to hold down his job or, you just don't think about things like that, you're busy, you know, in your world, aren't you? So it's only having gone through it myself that I realise what my parents must have been through. And then of course when, when my mother realised that I'd got it, I mean she was terribly upset.

As, as you would imagine and I have to say that I'm worried in the back of my mind that my daughter might get it at some stage because of course I was 30 before I got it and she's 21 now. So even although she's shown no signs of getting it now that doesn't mean that she might not get it at some stage in the future. So, it's, you know, it's a worry that's there. But at least I know now that if she were to get it that there are better, a lot better treatments so she perhaps wouldn't have to go through what I've been through because the drug regime that we were put onto in, you know, when I was diagnosed just, you wouldn't do that with people now. And we know that which, you know, of course we didn't know then.

Feels awkward and embarrassed because she can't do things and has to ask for help.

I mean, I can sit through, next to somebody at a dinner party for example and we will talk all evening about all sorts of things and it will never come up and I won't bring it up under those circumstances unless, you know, I was directly asked a question or you were to say, 'What's the matter with your hands?' or something like that. But where I do find it awkward, and I think, or embarrassing, and I think this is the same for probably most people, you feel as though you have to apologise all the time because you can't carry things, because you can't open heavy doors, because you can't climb up lots of flights of stairs, because you're coming out of the theatre and you're going downstairs one at a time because that's how you, the only way you can do it and you feel as though you're holding everybody up behind you. 

So you've, it's a disease where you feel as though you're constantly having to apologise because you can't do things. And so in those circumstances where, you know, in business terms I'm out with somebody and they think, 'Well why can't she pick that bag up and carry it herself?' You know, and then you have to explain why you can't pick it up and carry it yourself and so on, so it's, it's sort of embarrassing in that sense but there isn't anybody that I wouldn't feel I could, I could just say, 'Look I'm sorry I can't do that because I've got rheumatoid arthritis'.

I mean the supermarket is a classic example of that. My husband is forever saying to me. 'Don't carry the bags to the car. Get the supermarket to do it for you'. And yet I still feel embarrassed at having to say, 'Would you mind carrying my bags out to the car for me because I have arthritis and it hurts my hands'. I have, you know, because they look at me and think, 'Well she look reasonably normal so, [laughs] you know, why have I got to carry her bags out to the car? Who does she think she is, Lady Muck?' It's that sort of thing that, you know, you, you feel embarrassed about. Because to all intents and purposes you look reasonably normal. And when people see me walk they can see there's something wrong with me but you know, it's, yeah, it's, it is awkward sometimes. Because you don't always want to be going around explaining what you've got, but [laughs].

Feels better on anti-TNF medication with increased mobility and energy but still has extensive joint damage

But the being able to feel on this new drug better than I had been before, being able to get out of bed in the morning and walk as good as I'm going to walk for the rest of the day, instead of hobbling around, bent over like a little old lady was just great. I mean and, you just felt that you had so much more energy because you weren't battling against such pain all the time.  

I have been on the drug since December 2000 and it just is, it's just made such a difference to my life. It just has enabled me to get on with my life and yes I'm still in pain, I can't, and I, I've since had a knee, a total knee replacement last November because I've had the disease for so long I've got a lot of damage and the drug actually does help to reduce the damage but I'm, you know, I'm so advanced that it's, it would have to be a real miracle drug to try and reverse as much damage as I have.  

So I still can't walk any further or stand up for any length, any length of time but I do have less pain and less stiffness and I certainly think that I would have had to have had a shoulder replacement by now if I hadn't been on that drug.  
 

The new treatments becoming available make her optimistic for the future for people with early RA.

So I really feel optimistic for the first time ever that we have now got a range of biological drugs and we've got more in the pipeline that are coming through that over the next few years will come onto the market which will really give people with this disease hope that they will not have to go a life, through a lifetime of operations and ghastly pain and so on as I have been. And one of the things that I'm campaigning for is for a big trial to be done with people who have early RA because the small number of people with early RA who've been put onto these drugs and this is outside of the guidelines, the NICE guidelines, they're showing really good results. You, if you hit it hard in that first year after diagnosis with the new biological drugs then you have a real chance of putting the disease into remission or, you know, controlling it to a very large degree. And my goodness me, what a difference when I think back to what my father went through, it's just a huge progress and it's reassuring that there is this research going on.

Takes a 'cocktail' of drugs, would like to stop taking steroids but knows they help her mobility.

Well I don't like it and I'm, I've, I would like to be able to get off the steroids altogether because I've been on steroids now since '84 and it's made my skin thin and it's, you know, it's given me osteoporosis and I don't think I'm going to be able to get off them completely. I'm down to 3mg a day which is a very low dose but I'm also still taking hydroxychloroquine and Vioxx (now withdrawn) as well as the anti-TNF and the methotrexate so it's a bit of a cocktail. And you know that, you know long term these drugs cannot be they cannot be good for you but what can you do? I'm between the devil and the deep blue sea. If I don't take them I can't move. So you just have to take them and hope that you know leading as healthy a life as you can in other respects is going to have some mitigating effect.

Describes her charity work to increase the number of nurse clinics so patients have quicker access to rheumatology specialists when required.

In fact one of the things that we're doing in the charity is we're working with doctors and other patient groups to evolve and create standards of care for rheumatoid arthritis and inflammatory arthritis for the UK because there is no NHS, sorry, there is no NSF, National Service Framework, for rheumatoid arthritis and so we are effectively trying to create an equivalent if you like  because the, the different standards of, of care and delivery of service that you get across the country in different areas is quite disparate so we felt this was a, a very necessary a very necessary thing to do. 

We had to put down what do we think is a reasonable period for an urgent follow up. So if you are having a flare and you do need to get to your consultant for some treatment, what's reasonable? We've put a month down because the doctor that we were working with at the, at the time, I said 'A week' and he said 'A week, you're joking', you know 'A month'.

But if you're having a really bad flare, being told that you've got to wait a month before you can see anybody or you can get a Depo-Medrone injection or something like that, it's, it's totally unacceptable from a patient perspective so these are difficult questions and I don't know that there is actually an acceptable answer as far as patients are concerned.

This is one of the reasons why devolving some of the decision-making processes into the nurse practitioner's hands and getting that out into the community in the way that they've done in certain areas. For example, in one of the areas in, in the UK they have outreach clinics that one of the clinical nurse specialists does in the community and that works really well because she can prescribe, she can alter people's dosages and drugs and so on, she can even refer to an orthopaedic surgeon, without having to go back to the consultant. 

Now that's what we patients need because you can ring a nurse up and, you know, get yourself slotted in to a nurse clinic probably a lot more easily than you can get to see the consultant. So that would be great if we could get that model replicated and going in lots of other areas.
 

Feels surgeons could explain more and patients should ask questions about the planned operation.

I think they need to tell you, I don't, I think surgeons I think they may be better now than they were many years ago but I think they, they don't always tell you as much as they could do. But I think it's also in part the patient's fault because I don't think patients ask. And there is, there is a certain element of not wanting to know too much but needing to know enough to be able to help yourself. I mean my hip flared when I had my knee done. 

My hip flared quite badly and so that held up the progress on my physiotherapy on my knee and getting it mobilised because my hip was so painful and even with things like Pethadin it just wasn't really  stopping the, the pain. And then the surgeon explained to me that, you know, when, when he did my knee of course they got, the get your knee up by your chin and they're banging the metal in and they're sawing bits off bones and, and I'm thinking, 'This is too much information!' [laughs].  So, you know, but that explained why my knee, my hip flared, because my hip isn't used to being put through that kind of gymnastics. 

And so things like that, you know, you, you think, 'Well maybe he might have warned me about that'. Because I had, you know, two nights of no sleep at all and it's, nights are long in hospital when you're in pain and there's nothing much that they can do about it. So yes, they, they, I think they could probably give you a bit more information at times.

Describes her two neck operations and having anti-TNF treatment to assist the bone graft.

And they were going to put a metal plate and screws into, into my neck and, as I say, I, I was quite frightened about that and I was in hospital for about 10 days and it wasn't actually as bad in terms of pain as the hip and the knee have been but it was, was more frightening because of where they were operating.

Anyway, after I'd had that done, a few months later I was still almost in as much pain as I was before the operation and so more x-rays were done and they decided that they needed to go in through the front of my neck this time and, and put a plate on the front and more screws so that it was being shored up effectively from both sides. So that did upset me, got a bit weepy about that at one point. But you just have to grit your teeth and get on with it you know. You have to have it done.

I had the second neck operation and it's been, it's been better since then but I still get a lot of pain in my neck, especially when I've been on the computer a lot and I do work a lot on the computer and you know it gets to a point where you, you know, you just, you just have to come home and put your head back and, and sort of do nothing.

But one of the reasons for going onto anti-TNF treatment which I did in I went onto a trial prior to the licence of one of the anti-TNF drugs, in early 2000 was because I had to have this second op, neck operation and they felt that the anti-TNF would be a better chance of the bone graft taking because they took a bone graft from my hip to insert into my spine. And the first operation the bone graft hadn't taken, which is one of the reasons why we needed to do the second operation.

Recommends a healthy balanced diet and avoids food that might increase her weight.

You know, I drink lots of water, I eat lots of fruit and vegetables. I don't drink coffee or tea. And we eat mainly organic I would like to be able to, I don't smoke, I would like, I do drink wine. 

I certainly don't think that if you are, you know, you've got to think about things like being overweight. If you're very overweight and you've got rheumatoid arthritis then it's putting more load on your joints than you should be so it's, it's good to try and, you know, eat a balanced diet and, and not to eat to much of the sort of foods that are going to put weight on. 

She can't play sport, dance or go for walks, all activities she misses.

But I do remember sort of struggling to let go of the fact that I couldn't do things any more. And particularly at times like Christmas and holiday times where we would have family over and somebody would say 'Oh let's all go for a walk' or 'Let's all go down to the leisure centre and play squash or tennis or something'. And immediately I would feel this sort of catch at the back of my throat and have to go off into the loo and have a little cry because I just felt so out of it and so left out and  and people didn't realise. No-one would say 'Oh just a minute, can't do that so why don't you try and do something that we can all do?' People just didn't realise how disabled I was becoming, especially people who didn't see me very often. 

My husband used to walk a lot and now doesn't because I can't walk. There are just so many things like that. I mean I can't do any sports  so, you know, things like, I mean he, he doesn't now but he used to play squash and  ride his bike and do all those sorts of things which he gradually just stopped doing because I couldn't do any of them. So that is, you know, those things do affect not only your sort of well-being, your relationship, your social life together  but they affect, they may have had an effect on his health because he doesn't do any exercise now.  

And he doesn't do any exercise because I don't  So, you know, those, those things, you know, do have an affect. We can't dance together in the way that we used to. And actually I can, I have come to terms with not being able do all the things, because I used to ride horses and ski and  play tennis and do all these things, and I was quite good at them as well so it, it was quite hard gradually finding that I couldn't do any of those things any more. But the, the one thing that does really continue to bug me is that I can't walk. I cannot go for a walk and it's one of the most simple pleasures, especially on a lovely day, but that's, you know, one of the reasons why we got the wheelchair because I, we thought well, when we go on holiday and we go to a town or something, you want to wander round the town and look at galleries and sights and so on, the only way I can do that is in a wheelchair. Otherwise after 100 yards I'm having to sit down because I'm in agony. So that, you know, that's bugging.   

She found it hard to accept using a wheelchair.

I'm already having to use a wheelchair on, you know, occasions where the walk is longer than 100 yards. I mean we went to see Madam Butterfly at the Albert Hall last night for example and parked in, in Hyde Park which wasn't very far away but too far for me to walk. So, you just have to bite the bullet and get in this wheelchair which you don't actually want to do but it's the only way that you can actually get around and, and do things that otherwise you wouldn't be able to do. So there are all sorts of psychological elements to having this disease that are complex and difficult and emotional and painful and you have to, you just have to come to terms with.  

Staying positive and planning something nice to look forward to, such as a weekend away, helps take her mind off the pain.

I always try and have something in the pipeline to look forward to like a trip to the theatre or a weekend away or something every, you know, two or three months because I think that staying as positive as you can and as happy as you can helps. 

So if you've got nice things to look forward to then it's something that is it, it's just a nice thing that you know is, is there waiting in a couple of weeks time or whatever. I'm a very positive person I'm a, I'm a glass half full rather than a half empty person. And I'm also very determined so I work very hard and I find that very absorbing and very fulfilling and so that can actually take my mind off things when I am in a lot of pain. 

I, when I come home when I've been, you know, when I've done 8 or 9, 9 hours on the trot, I will just come home and I'll put my feet up and watch telly or whatever. And say to myself, 'Well even although I am supposed to have done this by tomorrow morning, sod it, I've done 9 hours, I can't do any more' and although having said that my husband does sometimes come into the office at midnight and, and say, 'Will you turn that computer off?' 

So apart from that I don't know. Just staying positive really. And I feel, I do feel lucky because, I don't feel lucky that I've got the disease but, you know, when I see sometimes, you know, there's always somebody worse than you. When you see other people you think, 'Well,' you know, 'there but for the grace of God'. So and I, I enjoy my life in spite of the disease I, I enjoy it.