Choosing and refusing treatment for arthritis

Some of the people we talked to discussed choosing treatments such as medication and surgery. Others felt that they had no treatment choice. This section describes the reasons why people chose to have treatment or not. It also describes why some felt that they had no choice at all. Here people talk about how they made decisions about their treatment and if they discussed things with their doctors or parents.
When making decisions about medication, people often based their decisions on information given by a doctor, who would talk about the probable benefits and side effects of a medication. Side effects are symptoms people sometimes get as a result of taking a particular medication, such as dizziness, headaches or sensitive skin. Different medications have different side effects, some small and some quite serious. Side effects affect everyone differently. Information about possible side effects can help a person decide whether a particular treatment is worth trying. They could either try the medication or ask for another option.

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

Age at interview 49

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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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People sometimes felt that they were not given enough information about treatments to make a decision. Sometimes they went away and did their own research online. Some felt there was too much information on the internet but were also pleased to discover alternative medications that doctors did not mention. Others were unhappy because they were not told about certain side effects before they chose to start a medication. Melissa said that her doctors didn’t want to give her information packs about medication. In the past she had turned down treatment options when she learned about the side effects.

Marie felt like she did not have enough information to make a decision about her son’s treatment…

Age at interview 49

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Are you happy about your knowledge of arthritis now?

No

No?

No, I don’t think I know enough stuff. I don’t, I don’t think I know enough even about Ryan’s particular arthritis. I know Ryan’s arthritis, I know how it affects Ryan but I; no I don’t think I know the ins and outs of it properly. I know it’s to do with the blood like I said and what the medicine’s trying to do but I’d say I’ve still got a basic knowledge but I’ve got a decent knowledge because of Ryan having it but I, from no knowledge to basic, because I don’t think it’s enough. For me, because I’ve got to make a lot of decisions for Ryan you see and I don’t think I know enough and I could actually know enough if the doctors just said well you know what you’re talking about then, I’d, I’d feel more safe, secure in myself to say, with Ryan I can make, I can make this decision for him to go on this drug then, that I know enough to be able to say, Yeah, OK let’s do this But I don’t think I do, I do know enough myself to, to, to have to make these decisions but I’ve got to make the decisions anyway so

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Sometimes the only choice people had was whether or not to take a medication. A doctor would suggest only one medication and there was no other option. Methotrexate is the first medication that all people with JIA will be offered. Some were happy to take what the doctor recommended. Others felt happier when doctors reassured them that the medication was safe to take.

Cat was happy to take whatever her doctor recommended because she trusts her doctor. She has…

Age at interview 24

Gender Female

Age at diagnosis 14

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When it comes down to treatment choices are you, are you actually given choices, are you kind of told what you should be on?

I’m more told what I should be on I think. I don’t really mind that though because I trust my doctors in general so if they have a suggestion for something that I could try then I would generally go along with that. It’s more the other way round probably when I want to stay on a drug and they say, "No you can’t," that that’s the only time I’ve really sort of had problems. For example that the non-steroidal anti-inflammatory drug that was causing my stomach problems I actually at the time didn’t want to come off it because as far as I was concerned a risk of stomach perforation versus knowing I’ll get definitely get symptoms, I’d rather risk, have, take the risk of the stomach problem than know for a fact that I’m definitely going to get pain and therefore not be able to live a normal life. And that might be, sound extreme to some people because why would you want to risk a hole in your stomach but that’s kind of the way I looked at it but the doctor then in the end actually gave me no choice and said, "No we can’t, we can’t justify you being on this," so they obviously weren’t prescribing it anymore. But never the other way round, it’s never, I’ve never had, had to, I’ve never, there’s never been anything that I’ve wanted to be on that I haven’t been allowed to be on or anything like that.

And have you ever been given choices not necessarily in terms of the type of medication but how you take them?

Again not really but I don’t think there’s ever, that’s ever really been an issue because I know with methotrexate you can have it, you can have an injection instead of orally and I think supposedly if you, if you get nausea and vomiting from taking it orally then injections are meant to be better for that. But I’ve never really had that side effect so I’ve never really even needed to be offered the injection and it is a bit of a pain having to take medication every day but I’m used to doing it so actually probably oral medication’s fine for me because it’s just a routine now.

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People sometimes chose how they took their medication. For example, some chose to have injections rather than tablets. People could choose to inject themselves or have a parent or healthcare professional do it. Some people had injections at home. Others had injections at a GP’s surgery or hospital. People sometimes took methotrexate tablets but later changed to injections because of bad side effects. Some never experienced side effects so stuck with the methotrexate tablets. Charlotte Y chose to take one anti-TNF medication over another because one came in a syringe while the other came in pen form. People could sometimes choose when to take their medication.

Michelle always felt sick for several hours after taking methotrexate. She chose to take…

Age at interview 25

Gender Female

Age at diagnosis 13

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Does the methotrexate affect, sort of do you become sick with it?

Yes I do. The day after I always feel sick.

For how long?

Well, I’d say it starts sort of late morning. So I’ll get up, I’ll have my breakfast, and I’ll get to work and I’ll start feeling quite sick. That probably lasts sort of four or five hours, and it starts wearing off later in the day.

And you take that every day?

Methotrexate? No, that’s once a week.

And do you take it during the weekdays?

Generally on a Thursday. But again if I forget, I mean sometimes I’ll be out in the evening or I might be working away and I’ll forget about the methotrexate. So I might end up taking it on a Friday or Saturday.

Who decides for you to take it on a Thursday? The doctors or you?

Me.

So it’s your option?

I just think it’s best to feel sick on a Friday, because I’ve got the, the positive to outweigh it that it’s Friday. So if you take it on Monday, it’s like, Oh, it’s Monday. And I’m feeling sick. Whereas on Friday, it’s, Yes, it’s Friday. Feeling a bit sick but it doesn’t matter.

And you don’t

That’s my logic.

You don’t like to take it at the weekend?

I don’t want to ruin my weekend. I’d rather be sat at work feeling a bit sick than, than have it at the weekend really.

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Younger people sometimes relied on their parents to make decisions about medications. Parents said they weighed up the benefits and side effects before they let their children take the medication.
Sometimes parents felt that the medications were too risky to take. Stacy said that she had “no hesitation” when her son was prescribed methotrexate. She said that the side effects were a “small price to pay” given the benefits of the medication.
Mary felt the side effects of methotrexate were doing her daughter “more harm than good”. It is important to discuss potential side effects with your doctor. After two months Mary made an appointment with the doctor to discuss alternative treatment options.
Tina was worried about the side effects of methotrexate so got a second opinion from a doctor in a different hospital.
Some parents made treatment decisions with their children. Jenna and her mum, Karen, made a decision together about Jenna going on a clinical trial. The doctor explained things and provided information both from a young person’s and a parent’s perspective.

Charlotte X did not want two Enbrel (etanercept) injections a week and was angry with her mum and…

Age at interview 49

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Okay then and you mentioned the Enbrel (etanercept)?

Yes.

Why did she refuse to have it to begin with? What were her concerns?

Her concerns was the fact that it’s a needle. She’s very phobic; I think she doesn’t like anything like that. She’s really never been ill you know she’s never had really anything wrong with her, so she hasn’t, she hasn’t herself been in that system. And so for her the thought of having an injection twice a week, was absolutely terrifying because she had no power. She already said no and they didn’t listen to her so she had no power, so she was feeling very belittled, she was feeling ever so isolated, she was depressed and then they said to her, Well it doesn’t matter what you say because I, what I’m going to do and I’m going to totally disregard you as a human being and I’m going to talk to Mum

Now, now Charlotte got very upset and said, I do not want to have it. I’ve said that And she was, she said she didn’t want needles, she didn’t know how it was going to make her feel so she had that scared, I’m lost, I don’t know. And when a child doesn’t have direct, directives of this is going to hurt, this could sting, this could bruise, this, that and they didn’t know how she would react, she felt lost and bewildered and belittled and so her back went up literally. And she said, No, I’m here but they wouldn’t see her. So she was very, very upset so she tried to gain control and so she said, No I don’t want to be injected. I want to be normal Was so called, inverted commas phrase which is a frightening word cos I don’t know anyone normal. I want to be a normal child, I want to run; I want to wake up in the morning and not ache. I want to be able to have no drugs. I don’t want to go to hospital every other week and see someone else and, and you know, and do tha and so they sat her down and she was talked to them, and she just went blank. Charlotte will go, she’s so, she just sat there and went blank. Which means there’s no, there’s no point.

So the nurse said, Well we’ve talked to you and Charlotte was just like that, looking round the room and said, I don’t want to talk no more. I’ve had it. I’m not here am I And they actually said, No which was the worst thing they could have done. So I, I talked to her as, not as a mum, as an arthritis sufferer. I took her outside and said, I’ve been on it cos she knew I’d been, she’d seen me inject myself in, in my belly years ago and I said to her, I think it will benefit you. If it doesn’t we can always come off it, but you have to give it a try. And that’s how you gain your power. You have your power by you saying you can do it, and then if it doesn’t work then you can say no and I will back you and I won’t let them do anything else to you. But if they are suggesting it, and then they think it’s a good idea, we should go along with it and if it doesn’t work, or if it makes you ill we can stop. And that’s your power. And you saying no, I will back you and we will go in that room and say well we’ve, we’ve done it, we don’t think it’s improved. Charlotte’s not feeling any better. We’ve discussed it as a unit and we’re not going to do it anymore. Can we try something else

And that gave Charlotte, said, Charlotte said Well okay, I’ll give it a shot. I’m not happy, I’m never g

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People were often able to make more choices as they got older. This was sometimes because people felt old enough to make decisions for themselves rather than relying on parents. For example, when Melissa turned 18 she felt old enough to tell the doctor that she wanted to try new medication.
Some people talked about finding out about treatments on the internet which they wanted to try. People also reported feeling more confident with age and started asking more questions about treatment. They sometimes asked to be seen by different doctors or at different hospitals. Some children’s or adolescent’s clinics encourage people to learn about their disease and medication so they can start to make decisions about their treatment.

Ruth said that she used to take whatever medication the doctor gave her without questioning it…

Age at interview 28

Gender Female

Age at diagnosis 5

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So do you feel as though you know you’ve been involved in the management of your RA?

Probably not as much, thinking about it now, as a 29-year-old mature woman, rather than a as a five year old child, probably not as much as, as I would have liked. It does tend, thinking about experiences and as I say, I’m looking back so it might be a bit off but sort of a, it’s sort of a one-way street almost. You sit down in front of them. They throw a lot of drugs and treatment at you, you know. They say have this, have that. Whilst I’m sure they wouldn’t any objection to you asking any number of questions. I think it’s a only, only relatively recently and not even now for a lot of patients that you feel that it’s your duty to be involved more, to ask more questions.

I think that is only a relatively recent thing that maybe ten and twenty years ago, that’s what you were expected to do. You go and you sit there and you say, I’m sick make me bette. They give you something and they make you better, that’s it. You don’t ask questions. You don’t interfere. You just let them do their thing and I think that probably when I was growing up that’s probably what we did, you know. We let them guide us, which is you know, not necessarily a bad thing cos we you know, they know about these things and you don’t, in the most basic terms.

But as you get older, as you’ve had the illness a long time, you learn about how your body reacts to certain things or deals with certain things. And then after you’ve had it a certain number of years as I have, you do then begin to answer back a bit more, to ask more questions. Also of course the other thing is that, you know, you sit there and they say things to you. They say, Take this drug or have this treatment, or have this surger and you don’t think about half the things you want to say until you’re back home. And you think, Oh I wish I’d said that’ and I wished I’d asked him that. And with the Internet, which is a great thing, you can go on line and find out about of things that, you know, you could have asked the doctor.

I know they say you should write a list of questions but I’ve never really done that. But no I think definitely it’s only really very recently and certainly with a lot of the women that I’ve seen on the ward, other patients, when the doctor comes on his rounds in the morning and speaks to them, they lie there and the doctor speaks to them and then the doctor goes away again. You know they don’t, it might be because they don’t have anything to ask him. But I, generally speaking he’ll always spend longer with me because I’ll always say, Well what’s this gonna do? How long is this gonna take? What affect with this have? It gives you more experience I suppose as you get older and you’ve got 24 years of experience so, it’s a good thing on the one hand and a bad thing on the other I suppose.

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Emma knew which medications she wanted to take and which to avoid. She was insistent with her…

Age at interview 23

Gender Male

Age at diagnosis 18

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I think. We see eye to eye but we, like I say I’m really pushy so I’ve always pushed for things and I’ve tried to push it like and he always has to control me because you have to be on like, you know, before you can move on with stuff you have to be on a certain drug for a certain amount of time and I’ve always been like, ‘Well this is it, it’s been three months, two days, this hour, right now, give me the next thing because this is obviously doing anything. So it’s always had to; maybe it’s more parent/child or parent/teenager that’s probably the best way to put it, you know, I’m stroppy and I’m going, ‘Well it’s not working, I want to go to university, I feel like crap,’ and he’s like, ‘Well you’ve got to give it time, this takes time, body takes time,’ and it’s like, ‘mmm’, you know, ‘I want this now,’ kind of, you know a little bit like a child

It may not be the case for you though that this was, it may be that your discussion was more open because you were aware of four different, you know, medications or you’d; the difference between biologics, Anti-TNF’s, the DMARDs and you listed them there. So were you in this position where you could negotiate or become almost a partner in decision making with your treatment?

Yes definitely.

Could you explain how that happened and what is what like then?

So they tell you, well I’d, so I went on methotrexate and I was put on a really low dose because you’ve got like your body of stuff like that straight away. And then so obviously started collecting leaflets and stuff and it was a, I knew the kind of, I’d made myself read and I understood what DMARD meant eventually and understood the kind of groups of drugs within that and when it came to kind of let’s up the methotrexate, let’s, you know. And I was happy to keep going because you know, you need to get to a certain point with it and give it a good three months before you’re supposedly supposed to see stuff and it was getting to the point where I wasn’t seeing anything and I was like, ‘Well, you know, there’s this and then there’s this and then there’s that, which one do you want to put me on?’ and it was more of a, at first because I was seeing, I was just, you know, that other nurse to start with and she was a bit reluctant and she was like, ‘You need to stay on the methotrexate,’ and I was like, ‘I’m not really happy,’ you know. All well and good you’re saying that this will work. Cool but you can put other things with it. It’s one of those drugs, it’s designed to be used with other stuff so I basically ended up; I was lucky enough to have my consultant appointments quite close together at that time because obviously it was so early on in the diagnosis and that was when I mentioned to the consultant that you know, There’s other drugs, give me other drugs,’ you know trying to worry him with the amount of painkillers I was chewing on a day and it was like, ‘OK well if this is really how much you’re taking, this is what’s going on and oh OK so you have had six steroid injections in this amount of time, oh god. It was a, ‘Yes let’s start,’ and then from there it’s always; I wouldn’t say I’d been in control because the biologics, I didn’t really know much about them if I have to be honest and it was only when they offered them and they started trying to get the money for them that I understood what they were and that was kind of my first year of uni and I was a lonely first year and we hadn’t really done much immunology so I didn’t understand all the stuff. And I was little bit, I was quite apprehensive ongoing, of actually going on those drugs because they were, well it was as NICE were overturning the rules for them on clinical trials because they’d been so effective that they decided that they were going to stop trials shortly and start actually issuing them as dru

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Some of the people we spoke to said they made choices about other types of treatment, such as surgery. For example, Michelle was offered ankle fusion surgery but decided not to have it. She said she did not want to walk with a limp and have to have her ankle redone every ten years.
Elizabeth was offered Botox injections in her eye. She said she had to “put my foot down” and demanded to be asleep for the procedure.
When Kyrun was in hospital his physiotherapist helped him set goals he wanted to achieve during therapy. Kyrun wanted to get his legs off the bed, get completely out of bed and be able to push his wheelchair by himself. The nurses and physiotherapists helped him achieve his goals.
Some of the people we spoke to refused medication or stopped taking medication. Sometimes this was because people did not like having injections. For example, Ryan stopped coming home from school on the day of his injections. His mum said, “He’d rather just have arthritis than another needle.” Dean had panic attacks and passed out when he tried to inject himself with methotrexate. He was afraid of getting it on his pregnant mum and harming her.
Charlotte Y stopped taking all of her medications because she wanted to get pregnant. When people stopped taking medication their arthritis sometimes got worse. Michelle always took her main medication but did not take lansoprazole (proton-pump inhibitor) which was supposed to protect her from the side effects of medication. She felt the medication had no immediate effect so she asked “why bother” taking it?
You should never stop taking your medication or change your dosage without speaking to your doctor. If people are struggling to take medication such as injections there is a lot of support available if you speak to your rheumatology team.
Sometimes people refused to take any medications because they did not want to accept that they had arthritis.

Sarah was taking Enbrel (etanercept) and didn’t want to take methotrexate at the same time…

Age at interview 22

Gender Female

Age at diagnosis 11

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I’ve had anti-sickness tablets but I’ve never noticed a difference with them. 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, I think it depends on what consultant you see. 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, 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 than the sickness and headaches every day.

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When she was 14, Deni stopped taking medication for ten years as a way of “rebelling”. She did…

Age at interview 26

Gender Female

Age at diagnosis 2

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To be honest, when I first done it I thought I was being like a rebel against the hospital, against the doctor, against the medicine, kind of saying, You know what, you know, this isn’t going to happen to me. There is nothing wrong with me, you know. So you don’t know what you’re talking about But the older I’ve got and the more reflective I’m now looking at it I think it maybe was in a way kind of self-harm because I certainly avoided it and didn’t want anything to do with it, even though I knew what was probably going to happen. I didn’t pay any attention and thought, Well, I’ll just, you know, its fine. I’ll deal with it later And I did put myself through a lot of pain for no reason I think.

Was that pain that intentional is also perhaps what I’m?

No, like I didn’t sit thinking, Oh, you know, I’m going to let my arthritis hurt me today

Okay.

But I think sitting with the pain rather than taking a tablet for it was my way of saying, Well, you know what? There you are and you’re natural and I’m naturally dealing with you so there you go. I don’t need to take a tablet for it But fortunately, the older you get the more you realise that you probably do need to take a tablet for it. it’s all.

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Surgery for arthritis

As drug treatments are continually improving, many young people with arthritis will never need to have surgery. Most young people can effectively manage their condition...