Melissa - Interview 50

Age at interview: 22

Age at diagnosis: 5

Brief Outline:

Melissa was first diagnosed with juvenile idiopathic arthritis and later with rheumatoid arthritis. She was on Methotrexate for about eight years. She has been on two Anti-TNF treatments' etanercepts (Enbrel) and adalimumab (Humira) and expects to be started on influximab soon.

Background:

Melissa lives with her parents and would like to do a writing course. She uses the Internet a lot emailing and talking to her friends abroad. Ethnic background/nationality' White British.

More about me...

Melissa lives at home with Mum and Dad and was diagnosed with juvenile idiopathic arthritis (JIA) when she was five. In her late teens she was diagnosed with rheumatoid arthritis (RA). There is no history of any type of arthritis in her family.

Melissa was on Methotrexate from the age of 8 to 12. It worked well but she experienced severe sickness and nausea. In 2003 her medication was changed to an anti-TNF treatment' etanercept (Enbrel). In her experience Enbrel worked really well for about three years but then it became less efficient. Her medication was changed to another anti-TNF treatment' Humira. Melissa says that it worked at first, but it didn't work as well as Enbrel. She was on Humira, for about two years. Doctors have recently switched her back to Enbrel while they wait for PCT approval to put her on another anti-TNF treatment' infliximab. Melissa knows that this new drug is given intravenously and that she will need to go to hospital to have it done. Her consultant told her that after her first infliximab infusion she would need to go back to hospital two weeks later to have the second dose.

Melissa has accumulated a great deal of information and knowledge about her condition. She usually asks her consultant lots of questions and searches the web for information. She has done lots of research on anti-TNF treatments.

Melissa says that having a positive attitude helps. She admits that sometimes she gets frustrated and down but her mother and father are good at cheering her up. Both her parents are an important source of emotional support. Her mother is her full time carer. 

Melissa has had a great deal of experience in dealing with consultants and her advice to them is that they need to listen to their patients. She describes herself as an expert of her condition because she is the one who knows what it is like to live with rheumatoid arthritis on an everyday basis.

Her local hospital say that they don't have funding to provide ongoing physiotherapy. A...

But physio, I used to have physio a lot. When I first had arthritis, I did have a local physio that I used to see regularly. We use, we have a hydro pool about five minutes away from us. And we used to go to that regularly. And do Friday morning hydrotherapy and exercises. 

And then we had, we had a place called the [name] which was, were the physios were. I used to go up there sometimes for exercise and stuff. And splints as well, they used to make you splints before the hospital did, the OTs at the hospital, did the splints and stuff. But yeah I was having physio regularly all the way up, until obviously I got to an age, where the hospital couldn't give you regular physio because I lived too far away. And the (local) hospital here can't give me physio because I need ongoing physio and it's expensive. And they're not really in' they can do physio if I have an operation. They can rehab me like they did with my shoulder. But I need ongoing physio and they're not really equipped for that. And it's expensive obviously. They don't have the time or the resources in my local hospital. For that. So at the moment there's no physio. I haven't had physio for probably about three years since I had my shoulder replaced. 

I was having regular physio yeah. 

You were having regular physio? OK. 

I used to go when obviously when I went to hospital. They used to have in me quite, quite a lot for physiotherapy and hydrotherapy. And I didn't have a physio here. But that was what physios at the hospital were for. 

Have you asked your nurse or the doctor about the possibility of having more physio or'?

Yes. They did inquire about it, at my local hospital, but like I said, they said that they haven't the resources, and it's expensive because I am a patient who needs ongoing physio. Yeah. And then they didn't offer my anything. But they did say that they did offer me' this is when I went up three weeks ago' as well as the infliximab, he did offer me joint injections and physio and hydrotherapy. But obviously I'm at a stage now where I'm so stiff and stuck, they might have to do the medication to get my joints down a little bit before they do physio because otherwise it will hurt more. 

So you will need to travel to another city to have it?

Yeah I need to go to [city] for that.

And how often would you go?

I think it depends, they did offer me the physio, the hydro, the hydrotherapy and the physiotherapy on a week basis, for me to stay in hospital to have that. So that I would go into hospital, have my first course of infliximab and have physio and that for a week. And then you know come home. But obviously as far as physio goes, it's kind of hard because obviously I live too far away from [name]. And my hospital can't really you know, give me the resources for that so. 

OK. So it's a question of you, the distance really?

Yeah, the distance. Yeah and the fact that my local hospital don't have the resources and the money. Because I am and I understand that I do need ongoing physio so. 

But I mean I don't believe that I can benefit from physio in a week, you know, like I can go into hospital and I can have physio for a week. And then it not going to work much because I'm not having it again after that you know. I mean it would make happier if my (local) hospital could give me the you know, maybe not even weekly, maybe you know

Melissa talks about the application and assessment process for Incapacity Benefit and thinks that...

Yeah. They, well, they gave, first of all they gave me Disability Living Allowance which you get if you've obviously got a condition like this that's ongoing. You can have two choices. If you apply and they grant you it, you can have, it depends how bad you are. You can have, obviously the money, they pay you each week. I have option two, which is the car. So what they do is the money that I have gets split into two, I get half of it and then the other half that I'm entitled to goes towards the car that I have, the mobility car.

And then, obviously I've had that since I was 16. Before it went to my mum who would have the car on my behalf. And she'd get Carers' Allowance. And then when I was 16 they gave the forms to me and said, 'You have to fill these in because you're entitled to DLA'. First of all, from 16 to 18 I was Income Support, but then they changed all the system and that so from 18 to basically now. I was entitled to Incapacity Benefit and it's basically, you get forms every six months. It's like a big thick booklet, asks you a million questions, you have to fill out everything. You get these little tiny boxes, you have to write as much detail as possible about your condition. Basically what they do is, it determines on how bad you are and if you can or can't work. Obviously at the stage I am I can't physically work so they give me the money instead of, you know, they gave me money for, you know' on behalf of me going out to work. Which I get fortnightly. So it goes straight into my bank account. But, you know, you have to fill out the forms. 

And then, now they're doing this thing where you fill out the forms and you send them back and then shortly after they've received them they ring you up and they make an appointment for somebody to come out and analyse you, because obviously now with all the benefit fraud and stuff like that you have to be analysed. So someone comes out to give you like a short interview to make sure that everything you've written in the form's, is true. Like if, you know, you've written down all the aids that you've got in the house, they check that you actually have them in the house that you're not lying when you say you can't walk or, it's things like that. I mean, obviously, it's a good thing because then you know that you're, they're giving you what you need. So, yeah, I've been on Incapacity for about several years.

And you don't mind this person coming to your house?

No, because I know that's what they have to do. Obviously I know that's what they have to do to, you know, be fair to everybody. Because, you know, if they, if I didn't necessarily need what they gave me and somebody else did, you know, it's kind of like, you know, you have to be fair. So, no, I don't mind that. I mean, I know it's, you know, what they have to do in the system to, you know, make sure that everybody gets fair amounts and stuff. So, yeah, it's fine.

She went to her local college but found the teacher unsupportive and felt the teacher...

I was sixteen. I left school at sixteen. 

OK.

When I did my GCSEs. 

Did you go to college or'?

I did go to college. I went to college in the September. They accepted me into local college. I went to do an administration course. Because I like to be on the computer and I like to type. I like to do things like that. And I thought you know an administration course is good. The only trouble was I had a teacher or tutor that wasn't very understanding. She wasn't very nice. She didn't like me because I was in a wheelchair, because she said I was a fire hazard. She actually said, 'You're a bit of a fire hazard in your wheelchair.' 

She wouldn't let me join in onto some of the practical coursework because she said if I worked in an office, I wouldn't be able to bend over and pick up the paper on the floor. I wouldn't be able to pick a box. And I said, 'Well in this day and age if you've got a disability and they hire in an office, you do the practical thing and ask somebody to help to you with lifting things, or they don't give you things to lift.' She wasn't very nice at all. So I did report her because she was' I mean it was kind of like, they had facilities for disabled people because they had a group of us. So they'd give me ' I was on the fourth floor. They gave me a radio walkie talkie so if the fire bells went or anything I'd have to radio through what floor I was on. And then I'd have to sit in the stairway in the wheelchair in the fire exit thing which is in the stairway. And once they left me up there. 'She's all right, we'll just leave her.' They did have lifts and stuff but I did, I did report the teacher I had for being not very nice. And she actually said to me, 'Oh well you've done a lot of coursework, but I won't put you for the final exam because I don't think you're going to be able to work in an office.' So I left college. And I'm, I won't go back to that college because she soured me. She did. I'm like no I'm not going back to college, because she was horrible. 

Who did you report her to?

The actual, I wrote a letter to the college. The bosses and I think' I wrote a letter in my own words. My mum didn't even know I was doing it. And I used one word, discrimination, and they all went, 'Oh no, she used the word, discrimination.' And they had, they had a meeting, literally two days after they received the letter. And I explained to them what had happened. And she was in the meeting and she tried to play off, 'Oh no, I didn't do any of that.' But I had witnesses. So she basically got told off for it.

And you went in there on your own without your mum on your own'?

My mum and dad came with me to the meeting. But they, I wrote the letter. And then I came down because my computer was upstairs at the time, and I said, 'I wrote this letter because I'm not happy with the teacher and stuff.' My mum said, 'Well if you want to do, if you want to send that, then send it.' Because she wasn't happy with the way they were doing things. But I was at the age where my mum couldn't go in and complain. I had to be the one to do it because I was, my mum was only, she only knew what I told her and what she'd heard. So I was the one that was kind of' I had to do it everything like from reporting and stuff because it was me who experiencing it. But you use that one word and they don't like it. And obviously yeah she got into trouble. But I won't go back to college. I did want to do an online course.

She is more concern about the side effects of methotrexate than the anti-TNF drugs. Besides she...

OK. Do you have any concerns about taking it?

Its no because with the anti-TNF medications they're not' I mean I've taken the, the two already. I know all the side effects and to me the side effects of the anti-TNF aren't as bad as what you can get with say obviously methotrexate. And so with me side effects are this big thing, like if I see something on the side effects list that says like a sickness and stuff. I'm going to get that, that's just me. I get it into my head, 'I'm going to get that.' And obviously I'm probably worried like I could take methotrexate again now and I might not get any side effects, like I did before. So I research a lot. But I'm not really concerned about it because obviously I'm at the stage now, where I will try anything, just to see if it works, because anything is better, than being in pain constantly. So obviously if it doesn't work, then there'll be other options. But I will just, I mean I'm not going to be stubborn and say, 'No, I'm not trying to because I've research and this it says blah, blah, blah on the you know, information packs or whatever.' I will try it at the moment just because anything is better than like I am now.

She has tried Enbrel and Humira but both drugs are not longer effective on her RA. At the time of...

And then in September of 2003, they had me in hospital to start me off on the Enbrel. I had twenty swollen joints at that time. So what they did is they started me off and I had like the first dose. And then I had a week of hydro, hydrotherapy and physio. And then I'd go home for the weekend. And they'd have me, they'd have me back for another week of the second dose. And then more hydrotherapy and physiotherapy.

And within two weeks, the twenty swollen joints actually reduced to like three. Everything just stopped aching. Everything, it worked really, really well.

I think I was on Enbrel for three years, until it started rejecting me. And the only reason it was rejecting, like my body was getting immune to it was because I kept getting tonsillitis. So I'd have tonsillitis, have my penicillin course, it would go away. And then like two or three weeks later, I would get tonsillitis again. 

When you say that it worked very well for like about three years '?

Yes it did very well for about two or three years. 

Tell me, tell me about that period, what were you able to do and'?

I was able to most things. I could walk without aids, obviously not long distance still because my hips were, my hips were stuck. So I'd still use wheelchair for long, long distance. But I could walk around the house. I could walk the stairs. Could I walk the stairs? Yeah, I could walk the stairs. I could you know, walk from say the car into the cinema, into the actual cinema, back out again and things like that. I could probably walk from my house to the corner shop just down the road, which was you know, quite good. And when we went into town shopping I could get out of the wheelchair, into each shop that we went into and look around and walk around and stuff like that. So it was, it did work. Very, very well. And then obviously it's, my body started to, "Hmm okay, we're used to this one now, we're going to stop. We're going to reject it." So they had Humira which they switched me to. I think I was on, I think it started to work at first, but it didn't work as well as the Enbrel first did. So I was only on Humira, for about a year and half, two years. And then they recently switched me back to Enbrel in June of this year. Oh no July of this year because by the time, you know, they got everything sort it out. So in July, I went back into Enbrel. It kind of worked to start with. And I then I think that my body thought, well no you've had this before, we don't want you to benefit from it. So it didn't work. I had a bit of a break. 

Obviously, now like this I'm still taking it. It's not doing as good a job as it did the first time around. But I think it's taking the twinge away from the pain. So now they want to try me on Infliximab, which is obviously the last anti-TNF medication they're got on the market, at the moment. Which has to be taken with methotrexate, unfortunately. 

Yes we saw the doctors in the hospital that I go to now, in [city]. A couple of weeks ago. He explained that they had the influximab was the last anti-TNF medication that you can get on the market. And he explained that it's intravenously and that they do it on the clinic. And you have one dose and two weeks later you come back and have the second dose. And they can usually tell if it works after two doses. Everybody gets a reaction after two doses. And obviously sometimes really, really good and sometimes not as good as you would've hoped. And you need more but usually you, you can, you get a kind of an idea if it's going to work after the first two doses.

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