Interview 25

Age at interview: 37

Age at diagnosis: 19

Brief Outline:

Juvenile chronic arthritis diagnosed '85, on steroids since. Hip replacements age 23 & 32, 2 knees together at 36 & wrist/hand ops. Currently Methotrexate, Prednisolone, Rofecoxib & Tramadol. Cinnarizine & Stemetil for side effects - balance loss & nausea.

Background:

Bank clerk, retired age 33 (due to RA). Single living with parents.

Rheumatologist told her the three likely outcomes of having RA.

But I was told as well that there was, there was a sort of an even split it was 30/30/30 that some people got rheumatoid arthritis and it never went away, some would get it and it would come back, it would sort of be an on and off thing, and then there are a group of people that would get one burst of it and then they'd be fine.

Had many different treatment and tests in hospital to diagnose juvenile chronic arthritis.

But while I was in they took various blood tests and things and they thought they could find the answer from my liver, so they did a liver biopsy, which again was, for me, it was, I was petrified basically. And they gave me something to calm me down and then I was fine.

Yes they did admit me straight into hospital. It was actually a cardiologist that did admit me, and he you know, he only sort a working knowledge really of arthritis or rheumatoid, but their, their initial sort of feeling was to sort of aspirate the knee and that was agony and nobody sort of really prepared me for it, they didn't tell me what they were going to do, they just did it and the needle went under the knee cap, which was very nervy and there was no sort of local anaesthetic given or anything like that.

I mean I don't know what the procedure is now and they did test me as well I didn't know why, but they took sort of a vaginal swab and the doctor told me later that they'll have been, I think it was gonorrhoea he said that they were testing me for, because that produces joint problems but he said they would never have offended you and told you that that's what they were testing you for [laughs]. So they do test you for various things before they come to that conclusion [laughs].

And were the other tests sort of blood tests or did you have other things?

Yeah blood tests and what they were doing I think the year prior, no not the year, yes the year prior I'd been, I'd been only to Majorca but I'd been asked did I drink milk and things like that, so as a result of being abroad and drinking milk and they were possibly testing me for like tropical diseases from Majorca [laughter] but they did send it away to the tropical diseases laboratory in London in case there was anything there. I mean I did feel in the beginning that they ruled out everything that they possibly could, they didn't sort of leave any stone unturned.

But in the beginning they did diagnose it as juvenile rheumatoid arthritis, Still's disease they told me, they did test me for various things because they did suspect lupus at one point. But they were all ruled out and they stuck to the diagnosis of chronic juvenile arthritis and what they told me in the beginning was that it would probably burn itself out within 18 months, because most cases do of the juvenile type of arthritis.

Hesitates to tell other people about her RA but explains if they ask about her scars.

But you know I try, like when I'm swimming now, I try not to be conscious of it, I just get on with it, but since I've been swimming I've had a few people that have asked me, I think it's because I've got a pair of scars as well, so you know people do ask me, but I don't mind as long, I would rather people approach me, than sort of stare and not say anything, you know I would rather people just come out and say something. I don't mind and you know I'll tell people. But I do find probably when I meet new people I'm reluctant to say what's wrong with me 'cos I don't, I don't want to be judged by that to start with. I want them to get to know me, because some people just sort of you know they think there's something wrong with you straight away, it sort of clouds their, their view of you I think, and I do try, it's not that I don't mention it, I just try and delay mentioning it till they know me a bit better sort of thing, I don't volunteer it.

An education course taught her to take painkillers at regular intervals.

They covered all sorts of things, like drugs, what drugs sort of are common for rheumatoid arthritis and things. Sort of treatment, they had a weekly, one week session with a chiropodist, another one with a physio, another one with a ward sister and they just sort of educated you to the back ground of what goes on with all the different aspects of your treatment and that was only, I think about four years ago and you think that you know everything, but there's always something else to learn and I found it really beneficial when the ward sister came in 'cos she, she explained how painkillers work a lot more, well in more detail than anybody ever had. I always took painkillers as and when and she explained that if you took them regularly, so she would explain that say if you took only four a day, you took them twice a day, break them down into one tablet and take them four times a day because she said it's much easier to prevent the pain, than to treat it when it's there.

And I have found that to be right. I do find that there is still a lot of stiffness and pain in my neck and that's the main thing that I'm taking painkillers for, but as I've discovered, if I just take them as and when then the pain comes back in my knee so that, that preventative measure that was explained on that course, it does work, it definitely does. You know and that was a major thing, you know to me, that I learnt and you know it was that many years in. You know I'd already gone about fourteen years not knowing that.

Thinks the benefit of a better quality of life from taking steroids daily outweigh the risks.

I do worry about it, but I do again like try and see the positive side, so I try not to let it prey on my mind I mean ideally I wouldn't like to be taking any of them and it's a constant sort of thing with the consultant when I go to try and get my steroids down, which I do try and do, but I find that I just, I can't operate really on a lower level. 

And I know that without steroids I probably would be in a wheelchair, because they do make that much difference but people, I find that people I come across in clinics and things are quite proud of the fact that they're not on steroids, but then again they don't have the quality of life that I've got 'cos they sort of shuffle in and they can't bend their hands and you know they can't use their hands but they're quite proud that they haven't had their joints replaced because they haven't had steroids and I still wouldn't choose any other way, I think that my quality of life is much more important than the length of my life and you know I know that steroids probably will shorten the length of my life and maybe produce other problems that I haven't come across yet.

But I'm still, I still think there's a balance there and I'm happy to take them because they just give me as near a normal life as I can have, where if I wasn't on them I'd be a lot stiffer, probably in a wheelchair and you know, not just not having a normal life really, probably leading a very isolated life. But it's not a treatment that they give now, they try and give them more sort of intermittently than like on a permanent basis like I'm on, cos that was the old style of treating it and you know it's not the way they do it anymore. But I am quite happy to be taking them really.

Takes methotrexate at night, with an anti-nausea tablet to prevent nausea.

And the methotrexate how often do you take that?

Once a week, and what I find with that is, that can make me feel quite sick, and people that I've spoken to they all say that, but I mean, the first thing that occurred to me was take it when you're going to sleep so that's what I do, I take it very last thing at night and I take it with a Stemetil then cos that's like just an anti nausea drug, that's the only other time that I take them, and I've found coming across people, they've like, they've said 'Oh I never thought of that' you know, and they spend like days feeling sick during the day, but you know as long as you take them and then your folic acid like so many days later, it doesn't matter what time of day you take them, so I get the least side effects from taking them immediately before I go to sleep, because I do find that I probably sleep better the night that I take them as well, and it really doesn't bother me.

Gold injections were inconvenient and did not help much.

I think my immune system you know did change with the arthritis, after trying various drugs, I was on Gold injections for about seven years as my second line drug and they, although they were fine and I was told they were safe and everything, I didn't feel I was really benefiting from them so I did ask to be changed cos that was a, a monthly injection I think it was, and then after that they did change to me to methotrexate.

Why was it that you changed from the Gold to the methotrexate?

It was just, I was reading articles about Gold not being good for you and things like that, but all of the drugs are not good for you, so you know they have to balance that, but it was because I was having to go for a monthly injection, so I wasn't really in control of it myself anyway, and then I had to always take like a, a water sample with me and I always had to have a blood test done for then, and then when I went onto Methotrexate I don't think I fully understood how they made you feel sick and all of that when I went on them, because I didn't know what I was going on, like you know just like another second line drug.  

But just to the Gold injections, I just, it was just a feeling that I had that I could probably get more benefit elsewhere and I didn't like the idea of going for the injections all the time, you know it was getting to be a bind and sometimes if you are having say a flare up or something, they'd change it to fortnightly that you could go for your injections and then you know make it back out to monthly, but when I was at work it was a problem to get out to get the injections and things, probably now it wouldn't bother me as much, but I wouldn't, I wouldn't want to go back to the Gold now, not after what I'm on.

A bone scan identified early osteoporosis but now she takes calcium and her bone density has not...

Because as a result of the steroids, which I'd always been warned about over the years, I've developed the initial stages of osteoporosis but it was very early and I've been taking calcium treatment for that and I've had a follow up bone scan, which was like, they were two years apart, and there was no significant change at all, so the treatment is working and it was caught early enough but, I did swap consultants and the consultant, the new consultant was a lady and I found her much more compassionate and understanding and she ordered a lot of tests, that probably should have been done on me earlier just to rule out things. 

She ordered like she ordered the bone scan, I'm trying to think what other, I can't remember, there was another important test that she ordered, but that ruled out something but the bone scan showed up the osteoporosis where the previous consultant I'd had he specialised in osteoporosis and he never sent me for a bone scan so, you know, if I hadn't changed I wonder how long it would have been left undetected and the longer it was undetected then the less likely, you know I would have had successful treatment.  

She felt claustrophobic having an MRI scan and her knees hurt.

What it was that after my second hip replacement I developed a problem, I think it was the sciatic nerve and the consultant didn't say exactly what he was looking for but I think with my symptoms I wasn't describing like a normal sort of pattern, so I don't know what else he thought was going on, I didn't ask him and he didn't say cos I was thinking 'Oh does he think it's cancer or something?' 'cos these things come into your mind, so he sent me for the MRI scan, but what did happen there was because I couldn't lock my knees straight they did have to give me like a little sort of foam triangle to support my knees whilst I was in, so that they were at a bent angle so that I could keep still and I was very claustrophobic. 

I found it very distressing really, 'cos I opened my eyes as I was being pushed in and noticed how close it was to my face and I am claustrophobic anyway so at one point I really, I nearly lost it but I didn't and when you were being pushed in they told you you were going to be in for 20 minutes, but it was 40 and I think that was a psychological thing, so you don't think you're going in for as long and what I did find as well was that they, I did get really bad pain in my knees because what they said to me was the magnet has probably heated up the hip replacements and that's like sending like vibration or whatever down the bone, so you know it was very painful, but I did manage to keep still but it's not something that I'd like to repeat if I don't have to ever. I would do it again if I had to, but it wasn't pleasant.

And did it discover anything?

Not really no, it maybe confirmed what he thought about my back, that it was my sciatic nerve but there was nothing else there, but that was probably a good thing I think.

Uses a special tablet box to help her remember to take her drugs regularly.

It becomes routine, but the big thing that I did do was buy like these sort of tablet boxes where you get like, they're supposed to be for seven days, but I get fourteen days out of them cos I only take my major tablets twice a day, and I make up say six weeks at a time and then you know for definite because they've got the days of the week on, because a lot of things because they're habit you don't always realise when you've taken them, you just do it and then you think 'Have I taken my tablets?', well you can go back and check in the box, so that's been like a big help to me, cos you know for years I used to maybe take four different tablets on a morning, so you'd be going through four different bottles every morning where now I only do that once every six weeks and then they're all made up in little containers.

So I find that much better and it does, you know the only time when I've forgotten my steroids was when I was on holiday and because the routine's different I forgot to take them on the morning, but by the afternoon I knew cos my neck goes stiff, I start like to go a bit sort of dizzy and just feel really unwell, so once I get them into my system and then it's a couple of hours before I start feeling normal again, but you know mainly, because my routine's more or less the same I do remember them. So I'm not, you know I don't forget and pain killers I don't forget [laughs] because your pain is always there to remind you really for them. I do try to keep them to a minimum but sometimes you just have to take them and you know like my pain's less now because of my knees being replaced and everything.

She has lost the range of movement in her neck and regrets not keeping up her neck exercises.

There was obviously something that they [chiropractor] did, because she [physiotherapist] was able to tell quite easily that I was being manipulated but I'll never know for definite but I didn't have neck problems 'til that happened and then over the next, over just the next year I developed a very stiff neck and then I gradually did lose movement in it and they did sort of stress on the importance of keeping up the movement in my neck and I was probably a bit lazy with it, but with hindsight I would push it to the limit because it is so easy to lose the movement if you don't sort of do all the movement exercises, and that's why now, you know I've learnt from experience that you try and push for as much movement as possible. 

But what I've found in, in my own experience is as you lose the movement and the joints become sort of more stiff and less able to move, then you sort of, your pain does decrease because you've lost the movement but it depends whether you know you're prepared to put up with that little bit of extra pain to keep the movement and try keep as normal as possible.

Synovectomy of the fingers was painful and did not improve her grip.

After that they did an operation on my hands because as a result of the hands curling in and the steroid injections they stayed sort of straight, my hands, but as time progressed I gradually lost my grip so I didn't have a very good grip. The orthopaedic consultant thought that I could benefit from a synovectomy which was just basically taking away the swelling and the tissue from around my tendons and that was hopefully going to give me a better grip. 

So I had that done on my left hand first and it was a very painful operation and again that was very frightening because I didn't know what to expect and the immediate aftermath of the operation is there's a lot of blood that sort of leaks out when you're trying to exercise your hand and for such a small area there's a lot of pain, so it was quite hard afterwards, but again within a few weeks, once you'd done your exercise and things, things came back to normal. But the operation wasn't successful so I never went ahead with the right one.

Has used silicone gel on her scars to reduce the redness and swelling.

I did use treatment as well, I don't know this might be beneficial to people. After my second hip there was a treatment that I'd read about and they've, and they've become more popular now and there's different makes of them. But it's a silicone gel that you wear on your scar and it reduces the redness and the swelling and I got that, and I had to buy it last time because it wasn't available on prescription and now it's available on prescription, so I've got that for my knees, but you've got to wear it for eight weeks, and with the knees being sort of different and moving more, I haven't got round to wearing it, because I know it'll show through my trousers and I know it'll more difficult to keep on.

Where like on your hip it's just easier to do. But that was, it, the, the four, no the five year-old scar looks better than the fourteen year old scar because I used that treatment. So I will use it for my knees, but you can use it on scars, it says that are up to 20 years old, as long as there's redness in them you can use it. So I will be using that as well on my knees because the bottom of the scar is not as prominent as the top. So I may get away with it, but it's things like short skirts, knee length skirts I couldn't wear those. Not that I wore a lot of them but that sort of option's really gone, and I do tend to wear trousers more anyway.

Recovered quickly from her bilateral knee replacement surgery by exercising regularly and feels...

Then since the operation the scar did take longer to heal because of the internal stitches. The, the outside scar didn't close over them and some were poking through, so my recovery was probably delayed to a point, but I did stop using crutches, these were cemented in these knees so I didn't have a choice with that, they couldn't do non cemented knees they wouldn't be stable enough, so I had to have cemented knees, so I was able to walk with them straight away. 

The crutches that I used I stopped using after three weeks and I was back driving again at five weeks so my recovery was quite quick, I did everything I was told with my exercises, did them three, four times a day and that, I built up walking, I live in a small close, so it was easy and safe for me to do sort of circuits of the close to get my confidence up walking again and when I'd built my confidence up after a couple of  weeks I ventured out onto a main road, and I just kept that part of my recovery up with sort of walking daily. And once the scars did heal then I started swimming, which brings us up to the present day really.

I've, I've started to build muscle again and again, I've been on a high for probably the last six months because the relief from pain is so great. Prior to the operation I really was scared again about what was happening because it's so final, you lose your knees, you can't put them back, if something goes wrong then its permanent so, you know, there was all that to contend with, but luckily I did have confidence in the surgeon and his reputation was correct because they've been excellent since he did them. 

But what I've found since my knee replacements, so this is only a recent thing is that I do seem to have more energy, because most of my pain has been sort of decreased and I think a lot of the sort of energy sapping part of it is the fact that you know the pain is sapping your energy I think. They do say that sort of tiredness is sort of side effect of rheumatoid arthritis but personally I have found that's no where near as bad since I've had the knee replacements, cos this morning I've just been swimming and normally if I've been swimming I would be sat sort of tired and almost dropping off to sleep, but I don't find that now, I can just carry on with my day as normal. I don't you know it doesn't slow me down or anything, so knee replacements are to be recommended if you really need them.

She asked her GP to transfer her to another consultant.

But what I did I transferred to another hospital and this consultant was given to me, the one my doctor referred me to, my GP referred me to, he was also retiring at the time, so I was just passed on to any other consultant then. And this man, he did a lot of research into osteoporosis and I think that's where his strengths lay 'cos everybody that I've spoken to that's seen him, says he has no sort of communication skills with his patients at all. 

You would feel like a nuisance when you went in, if there was anything sort of at the back of your mind, you'd be frightened to ask him and I've never felt like that with a doctor before, and what I did, there was an education group run by this hospital, and it was a 6 week course, and during this 6 week course, this lady consultant came in to do a talk, and I was so impressed by her and her attitude and she was just so lovely that I asked the occupational therapist that ran the course, I asked off the record if it would be a problem for me to transfer, and she had a word with her and everything was fine, so my GP just did a letter to ask to transfer and that was what I did.

But I find now my treatment is much better, because she is so thorough and she's very understanding and she's so approachable and you can ask her anything and she's always ready with the answers, she doesn't have to consult books and things like that. So I do, I do have every confidence in her.

Self referral to a specialist rheumatology physiotherapist is much better because the wait is...

I mean I was satisfied, but things changed to a point of where if you were referred for physio you'd be waiting three months for your physio and the point of getting you physio normally was to maintain your movement, well sometimes you'd lose that movement before you'd got an appointment.

But when I changed to the new hospital, they have a specialised physio department, where in the other, the first hospital it was just a general physio department, but in the new one it's a rheumatoid physio department, so they're much more in tune with what you need and you're treatment is a lot quicker and they let you refer yourself, they have a help line and you can ring a doctor between appointments to ask if you can have physio and then they'll come back to you with an answer, you don't have to wait for your hospital appointment to request it, which I find much better and the treatment I've had has always been really quick and probably longer lasting as well. So you know that is a much, like bigger advantage for this new hospital that I go to.

When you say really quick?

Within weeks, within a week or two, where at the other one you know you'd be on the waiting list for months and months, and that situation hasn't improved at all, it's still the same, you know I know from people that go to that hospital, but you know the second hospital, the physio department are really good, and I found after my knee replacements I didn't go for the normal rehab that other people will go to, they referred me back to the physio at the rheumatoid department and you know they looked after me and they sort of understand your limitations better and they know when to push you and everything and that really helped, the physio there, that was good.

Finds that swimming helps control her weight.

I do, one thing I did want to mention as well is I do have a problem with my weight with the steroids  I think it whether it slows the metabolism down or just makes you more prone to put on weight, but I've never let it get out of control and I find that if I keep up the swimming exercise it's a lot easier to control then, because as I've slowed down towards each operation I've put weight on, and after every operation I've got rid of it again, so but it does take a while, it maybe takes up to a year or so after the operation before I can get it back down to like what's an acceptable level for me.

And I am very conscious of the fact that the heavier I am the more wear I'll put on these on these artificial joints, so I do try and keep my weight down for that reason as well. But it is a lot easier to control when you're doing exercise definitely. 

Because prior to my knee replacements I was swimming regularly for probably 3 years more or less as I'd left work and I had the time to do it and you know I didn't sort of let it lapse or anything and it did keep my weight down. And as soon as I had to stop with my knees the weight started to creep on again. 

So I probably don't change my eating habits that much, but it's the exercise that makes the difference, so I would stress to anybody that if they can, you know if they can fit in some exercise that doesn't hurt too much and mainly it is swimming then you know the benefits are very good, definitely.

She sacrificed leisure time so she could continue working.

I didn't sort of struggle with work  but I struggled out of work, I found that if I had enough energy to go to work, what was happening was out of work I didn't have enough energy to do things that I wanted to do so sort of my own sort of personal life suffered a little bit for it because I couldn't always do things that I wanted to do. Like I wouldn't have the energy to go out on a night so I would, you know I would turn invitations down and things purely because I didn't feel up to it.

Sometimes I would push myself and then I would suffer the next day at work, and things like, like shopping trips or holidays and things like that, I also had to take into consideration when I would be back at work and if I exerted myself too much then I couldn't do it, or I'd have to take extra holiday at work, just to get myself over the sort of tiredness aspect of it.

Diets made her miserable and depressed. She tried them for about a month but they were no good.

I can't remember all of the things that they called themselves but I went to like a natural therapy centre and they, I mean what I found was that it was more like a session with a psychiatrist really, you talked to this man who was recommended by a friend who you know who's still, I'm still in touch with, but she's a big believer in all that, but I was willing to give it a go and they were like, they wanted to do a private blood test so they did that, and all they were looking for was the Epstein Barre virus and they said that was there. 

But they were telling me to avoid things like tomatoes and they were telling me, put me on like a strict dairy free diet and things like that, and I just felt worse and it makes you feel isolated again because you can't join in with normal things and you know if you go out anywhere you couldn't have like a cup of tea or things like that so I found that restrictive, but I suppose if I wanted it to work it wouldn't be. 

You know I say I'm quite positive, but I'm not positive about those sort of things, because I've found from experience that it just makes me feel worse, and I went to, to have like a Vega testing done on a machine, where they use electrodes and they, you hold one and they touch your finger and then it comes up with foods that you're allergic to. 

And I mean that was quite recent and it still, they still do come up with the same groups of food to avoid and it tends to be the things that I like which is dairy, I tend to eat like a lot of yoghurts and cottage cheese and things and they tell me to avoid them, and I love tomatoes and they tell me to avoid them, I've tried it a few times it's made me very miserable when I've been on the diet, and I've never had any benefit from being on the diet, but I can't say I've tried for longer than a month, a month's about as long as I've tried for and then I just have to give up 'cos it just makes you very I'm not a depressive person but just very down and your whole life starts to revolve around food which it wouldn't normally, you wouldn't normally be that obsessed with it. So you know I've found from experience that it doesn't work, but you know you read stories about other people that you know it does work for, so I wouldn't discount it for anybody, just not for me, yeah from experience anyway.

Has tried to reduce the strength of painkillers.

What I've tried to do is come off the Tramadol and go back down to Paracetamol, but what I found was I got below, when I got to four tablets a day instead of the eight that I've been taking, the nervy pain came back, like really bad, so I've had to sort of give up that, but that again is something that I won't just give up on. I'll try again in a couple of months and see if things settle down, 'cos it was explained that everything doesn't settle back down to normal from a knee replacement up to about eighteen months.

So while I feel fine and better than I've felt for years and like the clock's been turned back, there's still certain things that haven't settled back to where they should be, so you know I'll just keep trying with the painkillers, because I do, I do want to get back down to sort of a weaker one and one that's less dependant really. 'Cos in the Tramadol there is a warning to say don't take them for too long. So I think I do get addicted slightly.