Karen

Karen has rheumatoid arthritis. Her daughter, Jenna, has juvenile idiopathic arthritis. Karen and Jenna have their arthritis under control. Jenna may not need her medication in the future because she has responded to it so well. Jenna can turn to her mum if she has questions about arthritis and medication. Both remain fit through dance.

Karen is Jenna’s mum. Jenna is 14 years old and has juvenile idiopathic arthritis (JIA). Karen has arthritis herself and was diagnosed with rheumatism four years before her daughter was diagnosed with JIA.

Having lived with arthritis for a number of years, Karen saw similarities between the onset of her daughter’s symptoms and her own. She suggested to the GP that Jenna may have arthritis but the GP did not think this was likely and both were sent home. One day Karen noticed that her daughter was unable to bend her finger and make a complete fist. Karen had exactly the same problem before her diagnosis. Jenna’s GP ordered blood tests but no rheumatoid factor was found. Jenna was referred to both a paediatrician and a rheumatologist and had further tests before she was diagnosed with JIA.

Karen was initially worried about her daughter’s treatment. Jenna was put on the same medication as Karen – methotrexate. The methotrexate had given Karen unpleasant side effects and she did not want her daughter to experience the same thing. Karen also knew that the medication was used to treat life-threatening conditions and was worried about the impact this would have on her daughter’s development. After reassurance from the rheumatologist, Karen and her daughter agreed to try the methotrexate. This worked for a while but Jenna’s began to deteriorate. Jenna was placed on a trial medication called tocilizumab. Both Karen and Jenna are pleased with the results of the trial and hope that Jenna’s arthritis is gone for good.

Karen is Jenna’s primary source of information about arthritis and medication. Karen read lots about the condition when she was first diagnosed and read the latest literature when Jenna was diagnosed. Jenna finds this helpful because the literature available at the hospital is not written for teenagers and contains lots of medical jargon. Karen is health conscious and cooks specialist meals when she or Jenna struggle. Both Karen and Jenna lead active lifestyles and enjoy dancing and playing on the Nintendo Wii.

Jenna wanted to be an army nurse. Her mum, Karen, was concerned that Jenna’s arthritis would get…

Gender Female

Realistically I don’t know whether she would be able to do that because of the arthritis. I overheard him talking to somebody about you have to go through your basic training. Everybody has to go through the basic training and if there are any health problems I think that might cause her a problem. They might not accept her into the Army because of her arthritis but we’d have to look into that and going back to what I said before, she doesn’t like me telling people. I didn’t feel comfortable saying to the, the man from the Army that we were talking to, getting advice from on the Careers evening, I didn’t feel I wanted to divulge that she’d got this problem because she was there and I thought it might embarrass her and so I kept it to myself and just sort of hedged around the subject and I didn’t want her to feel that she couldn’t do it because of her arthritis as well, that it would hold her back. So I thought well I’ll not push that one but you know, just kind of sow the seed there that maybe she might not be able to do it that way.

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Jenna claimed travel expenses to and from the hospital when she was on a drugs trial but has to…

Gender Female

Financial support, do you receive anything?

Not for Jenna no, no we don’t get any help. The only help we do get with being on, since we’ve been on the drug trial, we used to get travelling expenses to go down to [Hospital] but I presume, they haven’t told me, but I presume now that we’re not on the drug trial even though she’s having the same drug, I can’t see that they’ll pay us to go so we’ll probably have to find that cost ourselves, which is quite substantial really when you add it all up. The petrol to get there, it’s a good three quarters of an hour each way if the traffic’s good and then you’ve got the car parking and then you’ve got the food while you’re there and the drinks while you’re there because you’re there for quite a while. We generally go to the café and have dinner so it, you know, there are quite considerable financial implications on it really.

Do you think that your lack of kind of financial support is because you’re not entitled to it?

Yes I think because my husband is a good wage earner, we’re not entitled to; possibly disability allowance she might be entitled to, I’ve never really gone into it. I’ve gone into for myself. I didn’t know about it until I went to the course I explained about earlier where I met other people with arthritis and one of the other girls who was a similar age to me, she told me about disability living allowance and said she could, qualified for it and suggested that I apply. So I then did go on the internet and looked it up about it and eventually I did get it an award for it so I do get some kind of help. But since I’ve had arthritis I’ve never worked full-time, I only work part-time and I did try going back to work full-time for a short period and it was quite hard actually because arthritis does make you quite tired and as I explained, the medication makes you unwell and I think it would be quite hard going back to being full time now. I’m quite happy to be part-time.

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Jenna was on a clinical trial for tocilizumab. Each time she went to the hospital for her…

Gender Female

I’m just interested in whether or not she’s on birth control tablets at the moment?

No they do as part of the trial; they do a pregnancy test every time you go. Once you’ve become pubescent, they’ve told me that they will do pregnancy tests because they have to make sure that they’re not pregnant before they give the medicine. But other than that they don’t make them take birth control or anything but obviously they’d make the parents aware that it’s very serious; you know if she was to get pregnant. Presumably she would have to have a termination I would imagine and that’s just something that you don’t want to go down that road really.

And would, it’s difficult because we’ll try to put it in the future but do you think she’d be comfortable coming to you asking for advice with sex and birth control?

I think she would ask advice but I don’t, she’s very, keeps, plays her cards close to her chest about boyfriends and so on, so I don’t think she likes to discuss relationships with me but I think she’s quite sensible and she will find out information if she needs it. She’ll come and ask me for information.

Are you aware of information about sex and arthritis that’s available?

No not really. I know that one of the drugs that I’ve just started taking, it said that you can have a special wash out if you want to have a family otherwise you’ve got to wait two years after stopping the drug before you can conceive. So it’s quite, obviously it must stay in your body for quite a long time.

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Karen felt that her daughter, Jenna, didn’t need to transfer to adult services until she left…

Gender Female

The next section then is on transition and I remember speaking to Jenna about this and am I right in thinking that the view was that it’s unlikely that Jenna would need to make the transition to adult services?

We asked the question and they said that they would keep her at [name of hospital deleted] which is a children’s hospital until she leaves full time education probably. If she stays in full time education she can stay there but once; they said it has been known that sometimes they will stay with them till sort of twenty one best case scenario but other than that if she got a job, she would have to go, I presume our local hospital where I go to.

That’s interesting, a lot changes. So it’s not on necessarily needs, it’s to do with the employment status?

Yes

OK

That’s how I understood it. If they are in education, then they can keep them but once they get a job, so if she left school at sixteen presumably and then went out and got a job, I think she would have to go to the, the normal hospital.

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Jenna’s consultant wrote a letter to the Exams Board so she could have more time during her GCSE…

Gender Female

Extensions for exams. Does she get any extra time?

She gets it if she needs it yes and it’s her choice whether she takes it or not. So at a certain time when everybody else goes out she can either go out with them or if she feels that she’s still got, needs some time, she just stays sat down and goes out as and when she needs to and she’s finished.

Is there a maximum time limit?

Yes I think so. I don’t know who decides that but, the consultant wrote a letter expressing that she had problems with writing and that it would be advantageous to be given consideration and so that was sent to the Exams Officer and she organised it from that letter.

OK so she may need that again in the future for her GCSE’s?

Yes I think once we’d got that letter, that letter stays on file and she can have it now whenever she needs it. I don’t think they would take it off her.

Does Jenna bring home any extra work because she hasn’t had to time do it at school because of her arthritis?

No I would say she, she copes pretty much in, in lesson.

And would you feel comfortable in supporting her with her homework if she did?

Yes, I mean we do help her with her homework like any parent generally does but she doesn’t tend to ask for much help, she just gets on with it.

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Jenna’s mum, Karen, feels that teachers should be more aware of arthritis in young people. Some…

Gender Female

And what about teachers? Any, any kind of messages for teachers?

Yes I think the teachers should be more aware of what’s going on. I don’t think they really, even though I work at the school, I don’t think all the teachers know what she suffers from. For example, one teacher, she asked if she could have some paracetamol because she was suffering one day and he rolled his eyes and said, Well do you really need them Because I work in the office, all she needed to do was come and ask me for them and he was quite off with her really about having to give her a pass to come out of class to go and get some paracetamol. Now I know that Jenna is very, very, it’s very rare that she takes anything extra and I thought she must really have needed that medicine to ask him to come out of class, and to feel, make her feel bad about asking, I thought that was quite bad really so I was quite bad and I sent him a message explaining her problems and he was totally unaware that she’d got the problems that she’d got which I thought was quite bad really. I think you should know your students and because that information is there, I’ve given it to the SENCO co-ordinator so it’s on her files and I think the teachers should be made aware that if a child’s got problems in their class but obviously he wasn’t. And I think that’s happened; again one of the teachers, she asked if she could go home one particular day because she was feeling sick and she went to a teacher and the teacher didn’t even come and ask me what I thought about it. She just told her to go back to class and see how she went and I work at the school. So I would have thought that teacher would come to me and say, Jenna’s been to me, she’s not feeling very well, what do you think? Do you think she should go home But she didn’t and she’d had her treatment that week so it could have been relevant to the treatment that she’d had and she just kept it to herself and never said anything and just sent her back to class.

Wow, wow

So sometimes I think teachers aren’t really very aware and that’s not just arthritis, that’s with anything really.

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Karen felt that her daughter, Jenna, was well looked after when she became part of a clinical…

Gender Female

I felt once she went on the [tocilizumab] trial, she’s been very well looked after. She had her own nurses, the trial nurses and they take her to every department, we don’t have to wait, we don’t have to queue. We, you almost feel like you’re queue jumping, you go to the x-ray department, you queue jump, you just go in and have your x-ray, you go to, because she, she volunteered to go on a, a little extra bit on the trial where she had to have regular x-rays done. Also when she has her bloods taken, somebody from the lab comes up and he takes the blood and puts it in the different tubes and so on and he’s the man in charge of the lab, you know. You just feel that you’re getting care and better retention and not having to wait the same and the; on the, on the ward she didn’t have to wait on the ward, as soon as we got there, they’d take her and they’d do all the different observations that they have to do – record all the different data and then they’d get her a chair straight away. Apparently we’re coming off the trial now. She’s been on it now for two years so she’s finished the trial and this next time that we go is the first time as a normal patient and we’ve already been sent back to a normal ward. We’re not on the trial ward anymore and they’ve basically warned us that you’ll probably have to wait because you’re; you’re just like anybody else now so I suspect that the care will change a little bit.

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Jenna was offered the chance to be part of a clinical trial for tocilizumab. She was given lots…

Gender Female

She carried on with the methotrexate and the acid but she wanted to go on a trial drug because, and that was called [tocilizumab] and they were very good with that. They gave us lots of information; they gave us a video to watch for Jenna to explain all about it from a child’s point of view – what would happen, what it involved. They also gave her a folder which she could read with lots of information in. As a parent they gave me another folder which was obviously a lot more intense which gave me all sorts of information about previous trials with [tocilizumab] that they’ve done already and from that we then had to make a decision whether or not to go ahead with it. We chatted with the consultant, we were allowed to ask questions from the information that we’d taken home to read and, and then she went on the drug trial. And that’s really been very successful; she’s been very good on that new drug. So and that’s where we are today really.

No. She was, she did get involved when we were changing it, when she, we were talking about going on the new drug on the new trial. She was very involved then and she listened and took on board a lot of the things that the consultant said about; there was a death on the trial and that really worried her and we talked about it together and we then went back to the consultant and, and asked the consultant about it and for me I still had concerns and I actually said to the consultant, If this was your child, would you put them on the drug or not and she said, Yes I would and she was quite positive about that so that for me gave me the confidence to, to do it really because it is very, they have to explain everything to you, they have to tell you all the bad side, they can’t just paint a good picture, they’ve got to tell you both sides – the good and the bad and it is very worrying to think that somebody’s died that was on the drug but how they explained it was the, the person might have had lots of other things wrong with them and the drug in itself is used for two different types of arthritis, one of which is a lot more severe than the type that Jenna’s got. I think it’s called systemic arthritis or something of that nature. And all that, there have actually been eight deaths now whilst the trial’s been running apparently but they’ve all been people that have the other kind of arthritis which is obviously a lot, a lot more severe than, than juvenile rheumatoid arthritis.

OK and were these concerns yours or did Jenna share these concerns?

She shared the concerns, she was quite worried about it and, and worried about putting herself at risk I think but; so it was very important that she was there and she listened to what the consultant said and, and that her fears were allayed as well, not just mind but hers as well because I didn’t want her to worry about going on it. I wanted her to be happy and I would never have done it if she hadn’t been happy to do it and they were other options, it wasn’t our only option so if she hadn’t wanted to go on it, there were other things that she could have gone on so it wasn’t life and death that she had to gone on that particular drug.

OK. Which I think you mentioned, where did you get the information from about the first death? Was it from the literature?

The consultant

had to explain?

Had to explain to us. She went through it all with us about, the, all the different side effects that were, that were common and less common and so on. The main side effect with the drug was stomach irritation and stomach problems and there were some, you

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Karen has rheumatoid arthritis. She noticed similarities between her daughter, Jenna’s, symptoms…

Gender Female

So I took her to the doctors that day. He had a look at it, he said he couldn’t see anything significantly wrong with it, so again he just said, If you’ve got, I’m sure it’ll go on its own. If you’ve any more problems and you’re concerned come back At that point I did mention to him the fact that I had arthritis and I could see some similarities but he said no, unless she’d had a severe illness when she was young, very, very unlikely that she would have arthritis like me just because I had it, didn’t mean that it would run in the family and she would have it. it’s not something that’s hereditary. So he just said, Go away and come back if you’ve any concerns Then maybe a month later, she, I noticed her writing and she was holding her pen awkwardly and she had her, her index finger pointed straight and I said to her, Why, why are you holding your pencil like that? Why are you holding your finger straight and she said, Because I can’t bend it and I said, What do you mean you can’t bend it and she said, It just won’t bend So that was when the alarm bells really did ring then and so I looked at her hands and I could see that her, some of her, her joints were slightly swollen on her thumbs.

So I really thought, I think she must have arthritis I really think that was sort of evidence of it. So I took her back to the doctors. He then, after some pressuring, sent her for blood tests, he then referred her after the blood tests to the local hospital to a consultant paediatrician and the consultant paediatrician did his different tests, like blood tests. He then brought be back for the results, said there was nothing conclusive, he couldn’t find any reason for the problems with her joints. He said, he said she wasn’t rheumatoid factor positive and therefore he couldn’t really explain it so I then pressed him and said, Well if you can’t explain it, could it be arthritis

Again he said very unlikely but in the absence of any other explanation for the problems with her joints he would refer her to [hospital] to see a paediatrician rheumatologist and let them investigate it further. So we then went to [hospital] and they did numerous tests, they did an MRI of her wrists, x-rays of her hands and blood tests and physical examinations and after all those tests it was finally the wrists that showed it mainly I think which convinced them, and some of her finger joints and they said, Yes it’s polyarticular JIA and they confirmed it. They said it wasn’t an obvious form of it. They said, you know, it wasn’t something that screamed out arthritis when they first saw her.

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