Sarah - Interview 54

Age at interview: 22

Age at diagnosis: 11

Brief Outline:

Until two years ago Sarah had very bad arthritis and was in severe pain. Her consultant applied and was granted funding to put her on anti-TNF treatment' Enbrel. Sarah describes Enbrel as 'completely and totally changing her life'.

Background:

Sarah lives at home with her parents and works part-time. She is planning to go back to college to do an animal care course. Ethnic background/nationality' White British.

More about me...

For a couple of years before her diagnosis Sarah complained of pain in her legs which her GP put down to 'growing pains'. When she collapsed in the playground with no feelings in her legs she was sent to the hospital. Initially doctors thought she had leukaemia but tests indicated that she had juvenile idiopathic arthritis (JIA). In her late teens she was diagnosed with rheumatoid arthritis. 

Sarah said that it took her a good couple of years to accept her illness. As a teenager she was in denial and refused to take her medication. She wanted to be like everyone else but realised that she couldn't do certain things like participating in PE lessons. Her schooling was affected by her condition particularly around the time of SATS exams when she was ill at home and unable to go to school. Sarah hasn't had a home tutor to helped her with her school work and found it difficult to cope on her own.

When she was first diagnosed her main problem was with her left knee but gradually it began to affect all her other joints. Over the years she had been on several drugs such as Sulfasalazine and Leflunomide. She was on Methotrexate for several years, first as tablets and later on in injection form. Sarah asked her GP to refer her to a specialist hospital in a nearer town because her local hospital wasn't offering much in terms of new treatments except surgery. Sarah declined surgery. Two years ago her rheumatoid arthritis was very bad and her new hospital applied and was granted funding to put her on anti-TNF treatment' Enbrel. She described Enbrel as 'completely and totally changing her life'. At the time of her first injection she was bedridden and could hardly move. She said that her quality of life has improved and although things are not 'brilliant' she has far more mobility than before starting on Enbrel. Nowadays, Sarah is able to drive and has a part time job and is also looking forward to go back to college.

Sarah has always found it very hard to cope with the side effects of Methotrexate' headache and sickness and has recently decided to stop taking it. Some doctors have accepted her decision while others disagreed. She is aware that her RA is better controlled when taking Methotrexate with her anti-TNF medication and since coming off Methotrexate she has noticed more stiffness. 

In her experience, Sarah has found that people whether friends or boyfriends are understanding and supportive but 'up to a point' and says that for them it is difficult to understand the problems associated with RA.

She thinks that despite all the difficulties and initial denial RA has made her a stronger person.

When I was originally told, I didn't actually understand. All I remember was my mum bursting into tears and getting very upset. Couldn't understand why, at my age, that I had something that, very commonly, gets mistaken for something that only older people have. 

I didn't know what was going on. I, to be honest, at that age, I didn't actually care. I just wanted to get out and go and see my friends. That was all I wanted to do. When the medication started, I admit I made life, life very difficult for my parents. I went into a denial. I didn't have anything wrong with me. I don't have to take this. I don't have to take medicine that's going to make me feel sick. I'm just like anybody else and I did go through that stage for quite a long time.

It was a good year or so later that I eventually, accepted it and sort of behave myself, because I did misbehave. I didn't take the drugs I was given. I sort of messed around with it. I didn't want to accept it but.

It was also made difficult at school. I had just started high school and I couldn't do PE or games. So, whenever I had PE or games lessons, I had to go and sit in another classroom with about six other children that had learning difficulties and so catch up on homework, and things like that, because I just physically could not do what they were doing. Which in itself was a constant reminder all the time. You know, why am I sitting here? Oh yeah, because I can't do what they're doing and.

But eventually, I grew to learn to accept what I'd got and deal with it, so I was very willing to try anything new that came my way, to try, you know, to see if it made any difference. Thing is, I've got over my fear of needles [laughs]. Had a major fear of needles and I've actually got over that as well. I think it's made me a stronger person really. Yeah.

In her experience boyfriends and friends do understand but up to a point. She would like to think...

I didn't really have friends come to see me. When I was at school, even now people don't have an understanding particularly of it, it's quite annoying that you'll say to someone, 'Oh, I have arthritis.' And you're, the immediate response you get every time is, 'Oh. Isn't that what old people get?' It's the first thing you get told. 

They do understand, I mean, I've had a couple of relationships where but they do understand to a degree, but then, I suppose, some people do get a bit, you keep turning round and saying, 'Oh, I won't be out tonight. I can't do this or I can't do that.' They do get fed up with it and that's why past relationships haven't worked.

As for friends, I never really had friends come to the house. Partly because of where we live, we live in a village, and it, you know, the transport issue and things, but, I don't think people quite understand, you know, if you say, 'Oh, my leg's swollen.' They think, 'Oh yeah. And your leg's swollen.' You know, they don't quite fully understand it. 

I have to learn to maybe take it from somebody else's point of view. I've had eleven years to get used to it and, used to the idea, and I know how to deal with it, so I try to have the understanding that it must be very difficult for someone to get to grips with it and understand limits, what I can and can't do. Just general day to day, how I feel. And, it is a worry, and, at the same time, I don't, it worries me that my condition could drag someone else down. 

You know, but I suppose there are people out there, no, they do learn to deal with it, or maybe they know someone before that's had it or got it. So I'd like to think there is anyway [laughs].

She couldn't cope with the side effects of methotrexate and stopped taking it. One of her...

But when I actually went on my last hospital visit, I discussed it with them and said, 'Overall, I'm not happy being on it.' I know, and I do feel the difference when I'm on methotrexate, in conjunction with Enbrel it does help my joints, but then I can't deal with the sickness and the headaches as well. I'd rather try and deal with just a bit more swelling than usual, than have to deal with sickness and headaches every day.

You were sick every day?

Feeling sick every day. And then there were times where I was actually sick. I also felt that my appetite was very suppressed on methotrexate. And just, in general, didn't feel too well. 

The only thing I'd say about the Enbrel, is that I've heard it's very common but I permanently have a sore throat. Sort of get blocked nose and things which, it, for a while I feel like I've got a cold coming on. You know, it, it's just some part and parcel of the drug and I'd rather suffer with minor side effects like that, than have the full swing of the arthritis so.

I'd much rather deal with that every day than not having the drugs, so.

And were you given anti-sickness [coughs] sorry, anti-sickness tablets, or, did they help?

I've had anti-sickness tablets but I've never noticed a difference with them. I, they've never helped. I had folic acid with the methotrexate as well and I never noticed a difference with that either. So, I've no, they've never made a difference.

And when you told your consultant that you were not happy with taking, with taking it, what was his or her response?

A lot of the time it's depending on which consultant I've seen. Some consultants have sort of scared me a bit and said, 'You know, your arthritis will spiral if you don't.' Because methotrexate works very well with Enbrel. They work very well together. Which I got confused about, because when I was originally told about Enbrel, I was told it was this wonder drug, in fact, they've known cases of people to have done anything between four to twelve injections and it's almost like blasted it out of their system, and they've been fine. 

And then you obviously hear about people who've been on it for a long time and. I'd sort of argue back and said, 'Well, if it's such a good drug, why does it need backing up with something else?' You know, and yes, I agree, it does help if you take it but, at the same time, I've made that decision that I can't deal with the sickness and the headaches every day. It interferes with my day to day life too much. 

So I think it depends on what consultant you see. The, the last one I saw, he was very good and sort of said, 'You know, it's your decision. If you're happy to live with the degree of swelling and activity that's going on with Enbrel at the moment, then that's up to you. That's absolutely fine.' And he was very good about it.

So I've decided to stay off the methotrexate. Just for my own, just help me feel better from day to day really.

So how long have you been off the, the drug?

I've been off it for about six weeks now.

Six weeks.

And it has shown in my blood test results, the activity's a little bit higher, but I have sort of a line where, there's what I can deal with and there's what I can't deal with and this level of swelling, I can deal with, I will learn to cope with it. And I'd rather cope with that t

Says that she has a more positive outlook on life since starting on Enbrel because she knows her...

Okay. So, is there an emotional side to your illness?

There is I mean, I'm the same as anyone else. I do get my down moments where I think, 'Why have I got this?' And I do feel that I have my teenage years robbed of me, because I, I'd never stepped foot in a club. There's a lot of things I haven't done that normal teenagers have done. 

But I'm certainly more positive now than what I used to be, and I do believe that's because of the drug I'm on. Because although it's there, it's not in your face as much and so I've had that. I can go out and do things more now that I want to do. I have my limitations but I can do them, whereas before, I couldn't do them in the first place at all. So I'm certainly more positive now that what I was. 

I do find if there's a situation that's cropped up that's upsetting, or something, I tend to get more emotional maybe than somebody else, so someone will have to go, 'Boo.' And I'll probably cry. You know, I do cry at things a lot more which, I've been told is when I've been to hospital you get given questionnaires when we go, and they ask you a lot of questions about how you feel emotionally, especially from day to day. 

And admittedly, I'll admit I can get down about things quite quickly but when it comes to the arthritis, I feel quite positive that it's being managed now and my outlook is better than what it was. I'm very positive compared to what I was before. So I, like I say, I think myself lucky compared to what it could have been. 

And I, you know, if I'm having a down moment I think to myself, 'There's people out there far worse than what you are.' You know, cancer patients and things like that. You know, I think the same goes, arthritis can ruin your life, but it won't take your life or something like that, you know. And, well I don't even know if it will ruin my life, motto, that gets on with it [laughs].

I try to anyway.

So what have you done within these last three years that you were unable to do before?

I've been holding down a part time job, at this farm shop. But it's the general mobility from day to day that has changed the most. Something so simple as getting in and out of the car which, you know, admittedly still is a struggle now, but before it would take ages to get in and out of the car. Getting out of the bath. 

The only thing I'll say that I can't do still to this day, is squat or bend or kneel on my knees. I haven't been able to do that for about eleven years, or since I was diagnosed actually. And it's amazing how something like that can really affect, you know, you think about it, if you drop something on the floor you'd think, 'I can't squat for that. I have to bend my whole body.' But I do work round that but it just general mobility, getting up in the morning, not being as stiff and as swollen and everything else. It is far better than what it was. I can also go out for longer periods of time. 

I mean, when my arthritis was particularly bad, this was just before I was put on the Enbrel, I couldn't walk by myself. I was either supported by my mum and dad. I couldn't even use the crutches because my elbows were swollen, so I couldn't even use crutches to get around.