Interview 03

Age at interview: 49

Age at diagnosis: 33

Brief Outline:

RA diagnosed '86. For 10 years chose NSAIDs/pain killers and complementary therapies. DMARD treatments started 1996 (various). 2 replacement shoulders 2000. Started Infliximab 9/02. Less pain/tiredness but pre-existing damage means hip replacement '04.

Background:

Lecturer part time, married with three children. Third child born 8 years after RA diagnosis (1994). First interview 9/02 and second interview 11/03.

Believes that a combination of genetics, flu and the shock of a bereavement contributed to cause...

Ah, why I think I got rheumatoid arthritis is well it's a two-fold thing I think. Probably why I think, I mean it's obviously sort of a genetic inheritance I have. But my brother died three years before I actually had rheumatoid arthritis so I think for the very first time I was probably, I'm extremely, I think, and still am, sort of very positive in the way I think. I think, for the very first time my thoughts were perhaps slightly negative, you know, having sort of experienced something like that. He was young, it was an accident.

And I think that probably was not in my favor, I was a young mum, very busy mum and I had a very, extremely bad bout of flu or something whatever it was. So I think it was factors at that moment of time which all compounded to me having rheumatoid arthritis. So I think, you know, I think each of those things in turn maybe played a part. So I'll kill my Mum really. No, honestly, I'm, you know, don't, I don't mean that really. Genetics. So my children have it.

Learnt she has a 'weak positive' result and decided to look for an alternative cure instead of...

So my husband happened to go for something quite, whatever, to the doctor and I said 'well do ask, you know, if the blood test has come back, you know what sort of, you know, what it is or if there's anything?' and I think just in passing, he said well, it's a weak result, a weak, weak positive for rheumatoid arthritis which, which was.

I don't know how I took it really because I don't think I really knew at that point, I very quickly became an expert on rheumatoid arthritis, but at that time I didn't quite know what it was really. So you know I thought, I didn't think I had a lifetime of a disease that I had to you know work, work with. So that's why really it was for me no big deal, it wasn't anything life threatening, I thought it was just something I had picked up that would go, really. So that's why I chose not to, you know go back.  It wasn't of any great importance, I didn't think, it was just an intrusion in my life at that time, one I wanted to get rid of, but I didn't think it would be with me for life.

OK, right. So I think what I was faced with, with was potentially a crippling disease and where do I go from here. I chose not to talk to my doctor, who would've been completely happy to have talked to me, but I think I possibly was going to cure myself at that moment of time. So, I think what I did is I looked at alternative therapies to start with and it possibly was, at that time, it wasn't, it took over my life and it was very intrusive, but it wasn't, I was very strong still, I was still very young, I had two children one of 6 and one of 3 and life had to carry on so it wasn't stopping me. 

Having the anti-TNF infusion every 8 weeks in hospital is a good experience, she enjoys meeting...

Yeah, I have the infusion once every 8 weeks. And it's, it's like a little club really. I mean it's nice actually. It's, it's a very nice environment, it's very relaxed which is great. If, if you feel relaxed then you don't mind coming. Yet, I feel it, I feel I need, well probably as time has gone on, I don't desperately need the drug at that moment of time. I think the effects of it after six weeks I would feel that, you know, the symptoms were coming back slightly. 

The last two infusions I think I haven't felt like that. So it's just, you know, I don't feel, previously I've felt I knew when the appointment was coming. I don't feel like that quite so much at the minute. But the environment is lovely. It's relaxed. It's a nice place, you know, to come. You meet the same people and it's, you know, it's a pleasant experience which is good. So it's very positive.

Yeah, it's, I'm glad I've done what I've done. You know, it's, but it's very positive what you hear, it's good. These sessions are good, that we do it all together, that, you know, you meet people, you can talk people and maybe it's little counselling sessions for us all. You know, maybe it's a way of us sort of coping with what we have, maybe.

And how many people, you know, sort of are at these sessions?

Well there were six of us today, five of us today. I mean, either sort of four of five, six. And you can talk, you know, across and whatever and you meet people from sort of early on to very late to sort of it, rheumatoid arthritis is very individual.

After being a bit concerned before her first anti-TNF alpha treatment she felt the effects...

So I had my first appointment in September 2002  and I was absolutely, I think I probably felt, I knew the reports of what the anti-TNF, you know, the good reports, and that to people, the good effects people had felt and I was slightly concerned myself that I would be one of the percentage that it wouldn't work. So I went slightly, hoping that it would work for me but, yes, it was a dramatic change that day. You know, I had, sort of everyone was very good. It was, you know, the staff were wonderful. You know, very nice environment. That night I felt completely different, which was very exciting. 

We went to Stratford-on-Avon that evening and I actually quite late in the evening, walked a distance which I would find quite difficult during the day, but at night-time I would find it very difficult the distance I walked. So it was wonderful. It was a wonderful experience. And I think it's probably, from a pain point of view, it's got better, you know, as time's gone on.

I was quite surprised really that, I was quite prepared for it not to, because previous treatments take time, previous medication you take there's a time lapse between you taking it, whether there is an effect or not an effect. So we, we've had to be very patient or we've had to be previously but this was immediate. This was immediate.  

She read as much about anti-TNF as possible to make a decision and to calm her fears before she...

Here I am 2002 and considering another sort of drug therapy because I think what I'm taking at the moment is actually not particularly that effective in a way, it's, I feel my mind and my body are out of synch. You know my mind is racing and I want to do things but my body is not doing what I want to do. I'm having my first infusion tomorrow of anti-TNF. I am not sure whether I'm going with it because I feel I have to try something else. I've read, I've looked on the website I've got, I've gleaned, you know got information from it.  It is all very well documented so obviously you know all that happens in a trial and it's pretty scary stuff, that you know it all.  

So whereas I think when I took methotrexate six years ago, I think the documentation on the drugs was not there and now you have it all on a plate, so you know all the bad and all the good and all the whatever. So probably with us being very well informed now it's actually, it's not so easy to, I think we've always wanted to be informed but may be with the whole wealth of information it's, you realise that the drugs you take are extremely potent drugs and it puts into question, you have to weigh up.  

Tomorrow I'm, it's I know what, they did voice concerns about lymph cancer and skin cancer with anti -TNF. If I had a choice in the whole scheme of life, I obviously don't want to be on medication to be quite honest, but I am. And possibly if I've got a chance of me physically doing more if this is what it does then I, you know, I think the chances, I think the odds are just in favour of doing it really. I'm not overly, I'm not overly delighted with it but then it's I think I have to do it, really I think I do for my family. I think I have to do it. If I can sort of walk slightly better or without pain then I think, you know I want to do that.

I think it's a chance I probably have to take. It's pretty well monitored so if there's any problems, you know they'll sort of jump in but I think methotrexate, as I say it's not so. I think any trial that takes place now, you know it all you have all the evidence there so we're very well informed, you know it all, whereas I think, methotrexate, it wasn't quite the same or maybe I didn't chose read all the information, so this seems slightly more scarier than, oh I don't know, I didn't what to go on methotrexate, either. But tomorrow it will come and I'll see really. You know I'm sort of anticipating whatever with slight sort of, slight, well very big concerns really, but I think it has to be done really.  

The shoes that the orthotist made her were unattractive and she didn't wear them but insoles helped.

Yeah, I had a pair of shoes, I had a pair of shoes made once, which looked like my grandma's shoes really. In fact we found them in the cupboard the other day. My husband said 'Are you going to wear these?' I said, 'Well do they look like me, really?' But, I mean, you know, they did their best really but, you know. Well he made me some inserts as well which was very helpful but you know with regards to sort of making shoes and whatever it's, we still have pride you know, even though we might look weird and whatever, we still want to look, you know, whatever.

So do you have trouble getting shoes?

Yes I do. I mean don't look at these now because they would actually really shoot me if they saw what I was wearing at the moment. Yeah, I do. I mean I've got a wardrobe full of shoes that don't really, you know, are not comfortable. It's quite dreadful really. If I find a pair of shoes that you know is comfortable then I wear them to death really. So it's a problem, it is a problem and it would almost be nice if you could sort of, you know, you could say 'Right, make me this pair of shoes that's ideal for my feet that look not too bad really'. That's what would be wonderful, you know, you need that really and that's, I mean they do they're best don't they, but'

Describes her shoulder problems, how she had them replaced with a 'wonderful' result.

I've had, I had a bilateral shoulder replacement in 2000, which was, well that was fantastic really, I mean that sort of it gave me a new lease of life because with your shoulders sort of stuck to your body, you can't pull your pants up and things like that and you know I sort of lost a fair old bit of weight because you can't get your mouth, your hands to your mouth either.

Well, my shoulders were actually stuck to my body, really. That was, they wouldn't move, I mean they would not do anything as I said, going to college, I'd have to make sure my husband was, if I wanted to go to the toilet, I'd have to give him a quick ring to say, 'Look I'm going to the toilet', you know, 'I've got trousers on' or whatever 'I need my zip'. So it was really, life was getting extremely impossible and just sort of reaching a filing cabinet if you've got your shoulders stuck to your body you can do so little, really.

I went to the consultant about my right shoulder which was very, very bad and he said 'Well show me your good one' and I did and he said 'Right, we'll take them, we'll do both of them really'. So it was, the waiting time is horrendous really, you know, once you know you're going to have it done it would be nice to go in the next day and have it done because the wait is horrendous really. Knowing you have to have something done and it only just, it gets worse and worse and worse. You know, the condition gets worse and worse and worse so what would be nice is to, you know, they've decided - do it.

But it's been, he's, he told me the outcome, probably what the outcome would be, that there would be no more than 90 degree, well you couldn't move it more than 90 degrees, yeah, 90 degrees, you couldn't move it more than that. That's what he had experienced in the past so I then thought 'Well what's the point of having that. If I've only got 90 degrees?' But it's wonderful, I can, you know, take my arms away from my body they were literally stuck to my sides, so it's been wonderful. That has been just, you know it's given me a new lease of life.

Recovery after hand surgery took longer than she expected.

I've actually had a tendon replaced in my thumb 'cos my thumb, the tendon snapped, so they transferred a tendon from my index finger to my thumb' well they, you know they replaced this, this knuckle joint as well, here as well' 

No I don't want any more surgery if I can help, you know this is the, sort of, it takes it out of you, it physically and mentally you know it does really and it's the recovery.

I hadn't realised that this would be such a long job because this is the start of an academic year and I had this done on August 12th and it's kind of stopped me in my tracks. I thought I'd go in, have it done and come out and carry on but you know, I was in plaster for two weeks and sort of a splint for 4 weeks or whatever. So yeah, it takes a lot of sort of rehab, really it does and, and it kind of stops your life for a while and it's not easy really.

The exclusion diet she ate for 2 years helped and she still avoids some foods but doesn't stick...

It was quite a long time ago I'm not, it was fairly soon afterwards. Yeah, we went my brother in law and I, we went to a dietary therapist and yeah that was fairly soon afterwards. And I was on this for about a couple of years, it was excluding red meat, it was excluding dairy produce, I was on rice cakes and you know all pulses and I made my family do it with me as well, you know, all everything.

It was, I was just sort of, you know, and I was taking all these supplements, minerals and whatever. It actually I think it helped. It definitely, it didn't take it away, but it helped me. It, you know, it enabled me to go on with my life really and I was still doing it when I was at university in '88. This was 2 years after being diagnosed. 

And I was still on this diet when I went to university because I was taking all my produce with me and eating it in the you know sort of whatever. But I think it was the second year, so this was going on to sort of 1990ish that sort of I decided that this is far to difficult to handle. You know, you couldn't instantly pick something up and eat it, you had to think about it what you were eating, so it's pretty wearing but. 

There was a marked change I can remember I was doing a teaching practice and at that point I decided I wasn't gonna, you know, I was not having goat's milk and whatever I was just going to have ordinary milk that they had in the staff room. And I can remember my, my elbows bent virtually overnight, my elbows sort of bent, well it was or perhaps not overnight, but it was, you know, it certainly, I could tell that what I had been doing had helped me. But I think once you've done something, it's very difficult once you've gone on that sort of diet for that long, it's you know it's very difficult. It's very laborious. It's very wearing. And I think it takes a lot of, just a lot, to carry on with that and I couldn't at that point, you know, I'd had enough of that really. 

It is important to diagnose rheumatoid arthritis as early as possible and to get it treated quickly.

You know, what you have to do is you have to diagnose this disease very early and treat it very early. And the only the problem is, is I think you have to, you have to be able to be extremely well informed of what happens. I, as you know, had to deal with it in my way. I think probably having dealt with it the way I did it would be, I mean, what I'm saying and what I did was totally different. So I'm, it's difficult for me to say this in a way because I, I didn't go onto medication for 10 years. But it's the damage now that's the problem.

It's not actually controlling the disease, if this is the answer, if anti-TNF, which it is helping me, you know, is actually helping, then it's the joint damage that's the problem. But we're human, you know, we have to deal with things in the way it's, you know, you have to deal with this emotionally. It's a very emotional, I mean, when you're diagnosed with something like this you have to find out all about it, you have to come to terms with it. There is a process that you have to go through and you have to deal with it in your way.

Feels that cod liver oil definitely helps.

Yes that was quite marked as well. I think again this was before I took medication, there was definitely I mean you know after a week of taking it the stiffness was not as pronounced or whatever. So I definitely swear by cod liver oil, you know, I would never miss a day with that 'cos that makes an awful lot of difference. I mean I've tried red lipped muscles and whatever and you know all sorts, but the cod liver oil is definitely, definitely good. I've tried the glucosamine sulphate and all these sort of things but cod liver oil's the thing. Absolutely, without a doubt.