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Alexander - Interview 55

Age at interview: 18
Age at diagnosis: 16
Brief Outline: Soon after diagnosis Alexander was invited to take part in a clinical trial by the consultant at the hospital. The trial is a randomised placebo controlled drugs trial and is double blind. Alexander is hoping that by taking part his health will improve.
Background: Alexander aged 18, is White British and lives with his mum. He was diagnosed with systemic juvenile polyarthritis at the age of 16. Because of poor health and taking part in the trial he is going to re-sit his A levels.

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Alexander is 18 years of age, White British and lives with his mum. Due to missing so much education through illness, and taking part in the trial Alexander is going to re-sit his A levels as soon as possible.

At the age of 16, Alexander was diagnosed with systemic juvenile polyarthritis. It was after the diagnosis that he was invited to take part in a drugs trial by a consultant at the hospital. At first Alexander was a bit worried about taking part in a trial testing a drug. He was also concerned about some of the potential side effects that included cancer. He also felt that the information he received was limited and used a lot of medical terms he did not understand. Alexander had the opportunity to ask questions about taking part in the trial. He wanted to know how taking part might affect him long term including going to university and having children. Although Alexander felt the research team was keen for him to take part, he discussed the trial with his mum and a few close friends before making a decision. He decided to take part and signed a consent form. He hopes that taking part will help improve his health and to regain some ‘normality’ in his life and be more active.

Before entering the trial, Alexander had to meet criteria to ensure he was eligible to take part. This included having five or more joints affected by arthritis, high temperatures, and a skin rash. Because he met all the criteria he was able to start the trial. He was randomised to receive the drug or the placebo. However, since being in the trial, Alexander has experienced some side effects. He has to report any side effects to the research team and has to keep records at home of his health including any headaches and medication taken.

He says that taking part can sometimes interfere with life in that he may have to miss social events or going out with friends if he has a hospital appointment. There have been times when Alexander has considered withdrawing from the trial when things have got difficult. For example, there were times when he felt frustrated with some of the side effects such as lack of sleep and skin problems. However, he then feels that if he comes out he may get worse. He says you really have to think carefully before withdrawing from a trial it isn’t a decision that can be made in a ‘split-second’. However, he is unsure if he would take part in any future drugs trials because they can be quite restricting and he now has his career and future to think about.
 

 

Even though everything is explained and you are given plenty of information, Alexander feels that...

Even though everything is explained and you are given plenty of information, Alexander feels that...

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Do you think it’s good to take, for young people to actually take part in clinical trials?

In some ways yes, in some ways no. Because at that age they don’t really know what’s going on. Their parents will know what’s going on. So in that way I’d say yes, because they don’t have to worry about all this stuff. But when you’re a bit older, you do have, you do read it and you do try and understand it. And it’s, so you do worry about more, but you do know what’s going on. So it, kind of that catch. Would you want to know what’s going on? Or don’t you want to know what’s going on?
 

 

Alexander understands that the trial was to find out any side effects of the drug. He has...

Alexander understands that the trial was to find out any side effects of the drug. He has...

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Each phase, you have to do this, of the trial. Each time, well, the first part is only over three months. So you have to sign to say, yes, you’re happy to do this. The second part is over six months. And this, the third part, this one I’m in is where you have to say, yes, I’m happy to go along with this long period of testing.
 
And do you understand the purpose of the trial?
 
I’m not 100 per cent sure. I think it’s to make sure the drug works, well, that’s kind of an obvious, and to make sure it works on a long-term basis. And to find out any long, long-term side effects or short-term, if there’s any damage. If it doesn’t do any damage, does it completely cure you or so on? That’s what I seem to have gathered from the doctors so far.
 
And in terms of the trial itself, what, can you, want to talk through that process, what’s involved? Because you talked about the first three months, then you talked about six months?
 
The beginning of the trial is just to put you on a drug. The first month, you have to go there three times, three visits to the hospital. The first is to get your first kind of check-up and your first injection of the medication. The second time is to get your second dose and a check-up. And then on the, sorry, that’s the first week and then the second week, and then on the fourth week you have your normal check-up and then you have your normal dose. And then they take you back on the second month. They only give you one dose on the second month. And then on the third month, the second dose. And that’s it.
 
That’s the first three, is that the first part?
 
Three months, yes, that’s the first section.
 
First three months? And is, what, is, when you talk about the, the drug, is that the trial drug?
 
That’s the trial medication, yes, sorry.
 
The second part, the second extension is for six months. And it’s, once again once every month you go back to the hospital and they give you a dose. But [now], this time it’s a randomised drug test. So it could be a placebo or you could be having the real thing. I think the, just to see if the drug actually works or if it’s in the mind or if it doesn’t do anything for you. It’s once again just a kind of experiment. But I only did that for about three to four months. And I was pretty sure I was on the placebo for the pure fact of my joints were getting worse and the kind of salmon-coloured rash was coming out again.
 
Is that the one that you had…?
 
Yes, that’s the arthritic rash.
 
That’s the arthritic, so it’s, that made itdid it make it worse or was it something new?
 
It was there before any of the medication, when I was on this medication. It does calm down but it sometimes still flares up. However this was, it flared up to how it used to be. It would cover my arms, legs, hands, anything. So that was kind of a, kind of an insurance, going, “Yes, maybe it’s not, you’re not on the drug any more, you’re on the placebo.” But how, because it was a double blind and I was no medical kind of worry, they didn’t take me off it. So, but after the third or fourth month they decided to call-up, because I was getting worse, but my bloods weren’t showing anything. And me and my mum went for lunch thinking, “Do I come off the drug? Do I stay on it?” So that was a good couple of hours, a littl
 

Even though researchers do their best to make trial information easy to read, Alexander feels...

Even though researchers do their best to make trial information easy to read, Alexander feels...

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And when you had all the information, you had the information given to you at the hospital to read?
 
Yes, they gave me most of it at the hospital and then some of it they sent over. It was a vast amount of information. It was, it was mainly medical, where someone who hasn’t had a training, doesn’t have the knowledge, wouldn’t really understand. But I think by law or some weird kind of thing they have to give it to you. So most of it, I didn’t understand a word of. But some of it you could see someone was trying to work it out and make it, explain to normal people, but it still was quite hard to understand what was going on at the very early stages.
 
Well, that, so it was quite difficult to grasp it all?
 
Yes.
 
And when you say there was a lot of information, was it like booklets and…?
 
It was booklets and files and, you name it, we probably got it given here somewhere.

 

 

Alexander also feels that Information about trial drugs can be confusing and also worrying,...

Alexander also feels that Information about trial drugs can be confusing and also worrying,...

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And when you say, so that all happened, so soon after that all happened and they gave you the diagnosis, you were invited to take part in the trial?
 
Yes, I was.
 
How did that feel at the time?
 
At first it was quite disturb-, well, not disturbing, quite worrying, thinking, “Okay, I’m on a drug trial. It’s a new drug. It’s obviously being used on other people, but they’re using it on young people where this medication is made for.” It’s to see what happens and experience what happens and just to see if any more information they can gather, gather about it.
 
And what information did you have about the trial?
 
At first, not really a lot. They said straight away in the information they gave me, “There is a possibility of cancer.” But that’s, from what I’ve read up over the information, that, in every trial that seems to be there. And the other one, it’s knocked out my immune system. But apart from that there wasn’t much information. It did seem to kind of loop over itself. It didn’t really explain much. It was just a lot of medical jargon again.
 
What sort of jargon?
 
Things I’ve never heard of. Or it did, as I’ve probably just said a minute ago, it kind of circulated over each other. It constantly repeated itself about information. They didn’t really know but they tried to explain it as well as they could. The cancer, I was, I was worried about probably the most. However I got told by quite a lot of people not to be worried about it as it is quite a common thing to say in all kind of information they’ll give you. That was the most information I kind of really got. It was saying what the drug was for, what the drug is made out of, what, I’m no chemist or doctor, so I don’t really need to know about that information. So apart from that, not much I could tell you. It told me about the proteins in my blood. However I already know that from my other doctors. Saying how it would attack this other protein and hopefully bring it down to a level. And that was basically it.
 
And when you say other people were telling you about, “Oh, well, cancer and that is always mentioned, and side effects for these things” who, was it the doctors that were telling you that?
 
The doctors and actually other people, people who haven’t actually been on drug trials. Just like general public, I guess, saying, “Oh, they’ll say that in pretty much everything.” And things I read on the Net. The doctors said that mainly though. Because, and I did actually trust them more than the site, the doctors.
 
Did they say what type of cancer?
 
No, they didn’t actually say. So that’s a bit on the interesting, well, worrying side, saying “We don’t actually know what cancer, if any.” And that’s probably the worst bit in my opinion at the beginning of the trial.

 

 

Alexander had some unanswered questions, including how the trial drug might affect his fertility,...

Alexander had some unanswered questions, including how the trial drug might affect his fertility,...

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And did you have questions to ask?

Well, main, my main question was, “Will I get better?” and, “Will it improve my lifestyle?” And another question was mainly looking at the future, not right now, but, “If I ever wanted kids, will this drug damage them?” As there are so many other drugs for arthritis and many, loads of drugs like that, where you can’t have children while you’re on them, or, “Does it damage me in any way later in life?” for where I can’t have kids and so on.

Because I think also you mentioned just beforehand, is the having the children was a worry, but also your career?

Yes, it was quite weird thinking, “Okay, I have to be in hospital quite often. So my career I want to go in to, it has to be quite a long base, quite an ongoing thing.” So you have to kind of work around the drug. So that’s a bit of a problem in my opinion, but I think eventually you could work around it.

Yes, those were the main problems in my opinion.

And they answered those questions for you?

They tried to as best as they could. It wasn’t something they actually had to think about, as they were in a children’s hospital and 4-year-olds don’t have to worry about that kind of things. So they had to look themselves, they had to ask around, because it wasn’t a normal question. So that’s something what was a bit, kind of a bit shocking really, to hear doctors looking for things they didn’t know. But I hope, I think they kind of reassured me, saying, “Well, we don’t think this is going to happen. We don’t think your illness is genetic. So it doesn’t carry on. So we don’t really know, but we think it’s not.” So that was okay. I pray for the best really.

I suppose, because that was one of the things you were concerned about, wasn’t it? Is that, it’s just not having the children; it’s whether you can pass anything on.

-- pass on, anything on, or if the drug will damage them. As there are cases with normal rheumatoid arthritis where their medication will damage the child.

But you felt, did you feel reassured?

I felt reassured if the doctors felt in that way. Because they didn’t know because it’s a new kind of question and they don’t have to think about that them, themselves. And they haven‘t, they’ve never had to answer that kind of question before. So I’m just kind of hoping for the best on that one really.
 

 

Alexander feels it really matters how health professionals communicate to young people at a time...

Alexander feels it really matters how health professionals communicate to young people at a time...

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And, so what, your motivation for, or the reasons for taking part, what were they?
 
Just to get some more like normal stabilising ability or anything, just to be a bit more normal, a bit more active. You know, what, as I said earlier, I needed help to do everything from cutting food to going to the loo. I didn’t have a life. It was just being here. So I didn’t, I was getting quite depressed not doing anything. So it was just kind of, “Yes, okay, we’ll do this and hope for the best.” So, yes, that was kind of my main point. Even if it made me 10 per cent better, I would be happier, I could be a bit more normal. Even if it made me better one day out of a month to a year, I don’t care, as long as it was something I can be looking forward to.
 
So it was kind of quite a low really?
 
Yes, it was probably one of the lowest points I’ve ever been, to decide, “Okay, what do I want to do here? Drug, no drug? What’s going to happen?” really.
 
So that was a key decision then really? It’s quite a big decision, isn’t it?
 
Yes, it was quite a long thought, well, it wasn’t really long because there was a few hours to really think about this, “Am I going to do it? Am I not?” So it was that kind of week where you thought, “Okay, if I do get all these, am I going to do it? Am I not? What’s the plan?”
 
And did you feel that you had to make a decision there and then?
 
They didn’t really leave me much option really. I’m not sure if they just wanted me, to get me better or they wanted to get me on this trial as quickly as possible. So it was, felt like a very pushed-in thing at the time. But it may have been for the better, it may have been for the worse. It’s still not known.
 
And did you have to sign anything to say…?
 
I signed hundreds of bits of paper just to say I’m quite happy to take this drug. So it’s, I still do this to this day. It’s still lots of paperwork. I have to say, “Yes, I’m happy to do this. I’m not happy to do this.” However because I was, did this when I was [under] age, my mum still has a lot more paperwork than I actually have to do still. So it’s constantly ongoing. If they find something new about the drug I have to sign a new consent form. When I first went on to the drug I had to sign a consent form. Each part of the trial, trial I have to go on to a, I have to sign something else and I have to learn more information.

 

 

Alexander took part in the trial because he wanted to do anything that might make him feel normal...

Alexander took part in the trial because he wanted to do anything that might make him feel normal...

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And, so what, your motivation for, or the reasons for taking part, what, what were they?
 
Just to get some more like normal stabilising ability or anything, just to be a bit more normal, a bit more active. You know, what, as I said earlier, I needed help to do everything from cutting food to going to the loo. I didn’t have a life. It was just being here. So I didn’t, I was getting quite depressed not doing anything. So it was just kind of, “Yes, okay, we’ll do this and hope for the best.” So, yes, that was kind of my main point. Even if it made me 10 per cent better, I would be happier, I could be a bit more normal. Even if it made me better one day out of a month to a year, I don’t care, as long as it was something I can be looking forward to.
 
So it was kind of quite a low really?
 
Yes, it was probably one of the lowest points I’ve ever been, to decide, “Okay, what do I want to do here? Drug, no drug? What’s going to happen?” really.

 

 

Alexander had to have a certain number of symptoms before he was eligible to take part.

Alexander had to have a certain number of symptoms before he was eligible to take part.

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So the time I actually went to see the doctor she said I had all of them. So I got given this book to fill out my temperatures as I had the salmon-coloured rash and the, the sore joints. And I, they felt, they said they think I’ve had the temperatures. If I had the temperatures, I’m eligible to go on to the trial. This took over a week and I had a temperature with them every day of this week. So as soon as I gave back the book they said, “We can throw you on the drug trial straight away.” So that was a, kind of a couple of hours’ decision, to decide if I actually wanted to go on to this trial.
 
So you kind of, there was like an eligibility criteria that you had to meet?
 
Yes.
 
And that was the rash –?
 
The rash, a number of joints would have to be inflamed, and the temperatures. Well, the rash was quite obvious to see. The joints were quite easily able to be touched and shown. But it was the temperatures what I had to do myself, and that was very quickly done.
 
How many joints was it?
 
I think it was about four or five. I can’t remember exactly.
 
So you had to have five or more [yes] joints affected?
 
And the temperatures over 38 degrees.
 
And you met all of that?
 
I met all of that. I met the joints straight away. I met the rash straight away. It was just the temperatures.
 
And so you just had to do that over a week?
 
Yes, it was, they said it can take up to a month to get this done, but I did it within a week. So that was quite quickly.

 

 

Taking part in double-blinded trials and not knowing which drug you are taking can feel a little ...

Taking part in double-blinded trials and not knowing which drug you are taking can feel a little ...

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What, can you tell me what your understanding is of those terms?
 
Randomisation. It just means like if there’s three people on the trial, one of them may be on the placebo and two of them will be okay. Or any other way. It could be 50'50 or 25'75. It, any order it can be. One person may have it, two people may have it. So it’s randomisation on that one patient. And it’s a double blind, so even the doctors don’t know. You don’t know and the doctors don’t know. So only the people who know it are the people who are making the drug and the drug trial people. That’s what I know about the randomisation. The placebo just means it’s not the drug. It can be sugar water for all we know, or aspirin. We really don’t know.
 
And did you mind that part?
 
It was weird, in my opinion, because you’re kind of sitting there going, “Well, am I? Aren’t I? Am I? Aren’t I? Am I just being ill? Or what’s going on?” So it was a bit worrying on that one, but you do kind of come to the fact that you think, “Oh, okay.” You do have to learn to deal with this bit because it’s part of, part of, well; it’s the point of the drug trial, to see if this drug actually works or if it doesn’t.
 
Does it worry you that, the fact that it, the doctors don’t know either?
 
The doctors don’t know, but your bloods will show it, won’t they? Well, they’re supposed to. Mine actually didn’t. But they’re supposed to. So if anything does really come out they have the ability to have to go, “No, we need to see it now.”

And have they told you at all when they might open it up to let you know if you’ve been on the placebo or not?
 
I don’t think I ever will be able to know, because the doctors still don’t know if I’m on it or was I on it or wasn’t I on it. I, I’m pretty sure I was because of the pain it felt in getting injected in and how it, how I felt in general. But I still don’t know ever, if ever I will.
 
Do you, would you want to know though?
 
It wouldn’t be bad to know. It wouldn’t really change much though, would it? So it would be interesting, but nothing would really change from hearing yea or nay on it.

 

 

Alexander was given a booklet to keep a daily record of his health including his temperature as...

Alexander was given a booklet to keep a daily record of his health including his temperature as...

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Did you have to fill anything in at home about recording things?

Yes, I had to, when I, I actually still have a book I have to fill in if I have any temperatures, if I feel sick, if I have any new symptoms. I have a headache quite recent, quite often. So I have to put that, every headache I have and what pills I take for it. So there’s the rash chart too, from the old rash. If that occasionally does come up you have to scribble that in. Or the temperature chart. So you have to, if you’re ever feeling a bit ill or you’re feeling like you have a headache, you have to take your temperature and describe what’s going on there.
 

 

The costs of travelling back and forth to hospitals in trials can mount up, but Alexander feels...

The costs of travelling back and forth to hospitals in trials can mount up, but Alexander feels...

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And in terms of expenses and things like that, have they mentioned, do you get?
 
Yes, we, well, we used to have refreshments and fuel. Yes, but now we’ve actually lost kind of refreshments. Because I think too many people were just kind of going nuts with the idea. Or just they couldn’t afford it, because if they have ten people and ten people spend twenty quid, that’s £200 per month including everything else. It doesn’t sound like a lot but if there’s, however many people are doing it, it’s, that’s –
 
A lot.
 
Yes.
 
But what do you think about being paid to be in the trial?
 
I think it can be a bad thing and a good thing at the same time. It could bring people in for the wrong reasons basically. They’ll think, “Oh, we’ll get some money keeping, keep it going.” But then it could stop a lot of people if they can’t, don’t get money.
 
Because it costs, obviously it costs about £30 to £40 to get there and back from here. So it’s a lot of money. So doing that once a month, it will build up. But then you could go, argue the point of, “How much is your health actually worth?”

 

 

Alexander was studying for his A levels at the time of the trial and had to organise his study...

Alexander was studying for his A levels at the time of the trial and had to organise his study...

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So how often, can you tell me like the involvement, how often you have to go to the hospital?
 
It’s supposed to be a couple of hours a month. But so far that’s never happened. When, because this drug, as I said earlier, knocks your immune system down, if you have like a cold, a chest infection or a sinus infection or anything along those lines, the doctors don’t, my doctors don’t seem to really like this idea of a drug trial, because they don’t really know much about it. So I have to go back to the hospital and they have to look at me and give me antibiotics or…So I have to do that maybe if I’m, if, like winter I’ll be do-, going back there once every two weeks. But even in the, the hospital day is supposed to take a couple of hours. I’ve never had it in a couple of hours. It takes about a day. You get there for about 11 o’clock and you finish like 6, half 6.
 
So it is a full day?
 
Yes.
 
And you can’t get treated at your local?
 
No there’s only two places in this country that I know of where they can treat you [names of hospitals]. So it’s something you kind of have to work around. If you want to go studying at university or you want to go out or holidays or anything, you have to really work your hospital appointments around.
 
And when you get poorly in between, you know, do you have to go back there for treatment?
 
It depends what it is. If it’s just like a cold, they just tell you to rest and be quite cautious. If it’s like a chest infection and it’s not, being persistent, they do ask you to come back in and they have to kind of check you out and make sure you’re doing okay.
 
Is that because you’re on the trial?
 
Yes, because they don’t want you to die on them or anything.

 

 

Payment for taking part in trials can be a good thing, but it can also attract people to take...

Payment for taking part in trials can be a good thing, but it can also attract people to take...

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It’s just that there’s, sometimes there’s a debate about paying young people to take part, whether it’s good to encourage them. But, like you say, it might be for the wrong reasons?

Yes, well, the, you can get paid for the normal drug trials, like the first human trials. I think that’s different again because you’re paying someone to risk their life. But then you could argue it’s like the army or anything along those lines. So you can constantly be in this vicious circle of, “Is it right? Is it wrong?”
 

 

Doctors and patients need to exchange information about any new side effects and you may need to...

Doctors and patients need to exchange information about any new side effects and you may need to...

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But luckily, as I said earlier, they just kind of said, “No, we can move you in to the third extension.”
 
And that’s what you did?
 
Yes.
 
And you had to sign some more forms?
 
Yes.
 
Did it worry you, having to keep signing these forms?
 
I’d say a little bit, for the pure fact of you have to, you have to know what you’re signing in to. You didn’t really want to just kind of sign willy-nilly. Just, so looking for what you have to worry about, what’s new on this form. Because the forms look pretty much identical. There may be like five new words or a new paragraph you have to look for to say what this new bit is. So that’s a bit weird.
 
Did they not explain that to you?
 
They did, but not extremely well. They just kind of went, “Here’s the paperwork. It’s not really that, not really that important. You’ve probably had it.” Like the sleep deprivation, that was like three paragraphs long, that was quite easy to spot. But then the skin splitting, that went down to a paragraph because lots of other people had experienced it too. So it was kind of, you had to push it down and down and down.
 
And were there any new side effects?
 
The new side effects were sleep deprivation was the new one, the new one. The skin wasn’t really new. I think it’s because if you’ve ever had like a skin condition like eczema or something, your skin is obviously going to be weaker, so they had to kind of develop around that. So that could have been something they had to worry about. There’s something else, another medical, I can’t remember what it’s called, but it’s something where your body literally repels itself and it causes high temperatures. Luckily enough I haven’t had that. But that’s something what’s recently come out. And I think it’s called mus or mos or something.
 
And they have to let you know about that?
 
They have to let you know, and this, and things like that the doctors will actually come and tell you clearly and simply. So they tell you, “If you look out and find these symptoms, come back and tell us straight away.”

 

 

Soon after starting one stage of the trial Alexander noticed his arthritis symptoms getting worse...

Soon after starting one stage of the trial Alexander noticed his arthritis symptoms getting worse...

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The second part, the second extension is for six months. And it’s, once again once every month you go back to the hospital and they give you a dose. But how, this time it’s a randomised drug test. So it could be a placebo or you could be having the real thing. I think the, just to see if the drug actually works or if it’s in the mind or if it doesn’t do anything for you. It’s once again just a kind of experiment. But I only did that for about three to four months. And I was pretty sure I was on the placebo for the pure fact of my joints were getting worse and the kind of salmon-coloured rash was coming out again.

Did it make it worse or was it something new?
 
It was there before any of the medication, when I was on this medication. It does calm down but it sometimes still flares up. However this was, it flared up to how it used to be. It would cover my arms, legs, hands, anything. So that was kind of a, kind of an insurance, going, “Yes, maybe it’s not, you’re not on the drug any more, you’re on the placebo.” But how, because it was a double blind and I was no medical kind of worry, they didn’t take me off it. So, but after the third or fourth month they decided to call-up, because I was getting worse, but my bloods weren’t showing anything. And me and my mum went for lunch thinking, “Do I come off the drug? Do I stay on it?” So that was a good couple of hours, a little chat. And then came up to the ward again to say, “No, we don’t need, you don’t need to worry about this anymore. We can put you in to the third extension straight away, where you‘re guaranteed the drug.” But it’s for a long period of time. I think it’s for about two and a half years, to see if the drug was having any long-term side effects and that kind of stuff.

I noticed I could actually go to sleep without these pills. And it was it was quite obvious that I was starting to go back in to kind of my old ways. My skin was starting to flare up with the rash. I was getting, temperatures were going up higher and my joints were getting definitely a lot stiffer and harder to move. So that was a bit frustrating, knowing I’m on this but they can’t do anything for me for six months because of mmm. The first month it wasn’t so bad. I was learning to just go, “Oh, yes, I’m getting a bit tired, a bit stiff. My arms are getting a bit sore, itchy.” I think that could just be maybe one of the, the kind of irritation where the skin splits, going, “Okay, I can live with that again.” And then the second month I noticed I w-, didn’t have like the flu-like symptoms. So I kind of, “Okay, that’s a bit weird.” My joints were getting worse. And then on the third month my joints, my ankles and my knees especially did just kind of d-, decrease to their normal ways. So I had to go, “Okay, that’s enough.” But it didn’t show in my bloods. So the hospital couldn’t do anything for me. So, as I said earlier, we had that kind of long decision, “Do I come out of the drug and look for something else? Or do I hold on for the next two months and hopefully they’ll put me in to the other extension?” But luckily, as I said earlier, they just kind of said, “No, we can move you in to the third extension.”

 

 

Soon after taking the medication Alexander felt poorly, and he sometimes found it hard to cope,...

Soon after taking the medication Alexander felt poorly, and he sometimes found it hard to cope,...

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And the side effects you’ve mentioned. Can you tell me a bit more about those?
 
The side effects, I’ve found most of them. The main one in my opinion is probably the sleep deprivation. That’s the thing they didn’t mention at all. As if you’re a 4-year-old staying awake till 2 o’clock, it’s not actually that bad, because you probably used to going to bed about 8. So your body will only go, go so far. But when you get a bit older, your body learns to stay awake a lot longer. So staying awake till 2, you can do that easily. So now you can stay up two days without sleep. So you do physically and mentally struggle with day-to-day basis, just trying to work things out. That’s probably the biggest one to me, because not being switched on is not good. Probably the other one is, well, there’s quite a few, but the, my other kind of main one is the immune system. It gets knocked down. As my skin, as recently my s-, well, my skin’s been splitting since I’ve been having the drug and it won’t heal. So you’re on antibiotics quite a lot. They did mention this in the, this is what they did mention in the paperwork at the beginning, knowing about this. So I wasn’t as shocked as the sleep deprivation. So, but it does kind of knock your confidence down. Because if you’re kind of scaly and not very nice, trying to shake someone’s hand is not great.
 
Well, how does it come up then?
 
It kind of blisters and then it will eventually split and it will scar and, or it just won’t heal. So it can heal in a few days like a normal cut or it can heal in a few weeks with vast amounts of antibiotics on. Or if you have some, a friend or anyone, a colleague, a colleague who’s got a slight cold, if you go near them, you, I’ve noticed you’ll catch the cold a lot quicker and a lot easier. And that won’t just stay as a cold. It will kind of develop as a chest infection, a sinus infection etc. Another one is something I actually call the aggressive hunger. They haven’t mentioned it anywhere but, and no one else seems to have this, but the doctors keep saying this is because I’m getting better. But I used to be better; I used to play a lot of rugby, so I do know what it is not to eat, having like trainers and stuff. So I don’t think it’s that kind of hungry. You can eat as much as you physically want and you’ll be, still want more. It’s something you really have to learn to deal with. So that obviously puts a lot of weight on you. And because I can’t do as much exercise I can’t burn it off as well. And the last, what’s the last one? Which ones have I mentioned?
 
You’ve mentioned sleep dep…
 
Sleep, skin.
 
Immune.
 
Immune.
 
And the eating.
 
Eating and this last one.
 
Is there another one?
 
I thought we said four last time.
 
That is four. Sleep, eating…
 
Yes, it is, crikey. Yes, sorry about that.
 
And is that, did you, when did you notice those symptoms?
 
Oh, sorry, the last one is the flu-like symptoms after you have the medication. As soon as you take the medication, after a few hours you start feeling quite fluey and not great. But after, after call it about a week, after the first three days you do kind of decline into this kind of fluey-like state and you don’t want to mo
 

Alexander sometimes thinks about dropping out because of unpleasant side effects of the trial...

Alexander sometimes thinks about dropping out because of unpleasant side effects of the trial...

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And I mean did they mention about withdrawing, that you could withdraw?
 
They say you can withdraw, but it’s very hard to because they don’t want to let you out really.
 
Sometimes they will give you really good points for not coming out of it, “Okay, well, do you really want to come out of it while your exams are going on? Because you’ll have to look for more medication.” But sometimes it’s just, no, you don’t want it. “Okay, is there any reason?” “No.” “Okay.” So you just kind of sit there and kind of work out well what’s your best opinion.
 
So it gives that option, but they’re not keen on you….
 
Yes, well, I think that’s just kind of they put so much time and effort and money in to you, they don’t want to lose a good resource.
 
And have you thought about withdrawing?
 
I’ve thought about it a few times, just due to kind of getting annoyed or frustrated with some of the like side effects like the sleep withdrawal or the kind of skin or any of those kind of things. You just kind of think, “I’m sick and tired of this now. I just want to be normal. I can’t be arsed with chest infections or any of that kind of stuff anymore.” But then you think about it properly and go, “Well, what happens if I do come off it? Am I going to get really bad or even worse than I was? Or what happens?”
 
If you want to come out of a drug trial you really really have to think about it. It’s not just kind of one of those split-second things, thoughts about it. So, I don’t know.

 

 

Even though his health is closely monitored, Alexander sometimes feels that personal feedback is...

Even though his health is closely monitored, Alexander sometimes feels that personal feedback is...

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And the results of the trial. Have they talked about that at all?
 
Not really. They haven’t really shared much of that information with me. The only people who seem to really know what’s going on is the drugs trial company and the doctors. But they don’t really seem to share that much information. I say the doctors, they seem to know what they are do-, doing. They obviously know what they’re doing. But they don’t have all the information. As well, they have to send a lot of it off to this company in [country].
 
So it all goes there?
 
Yes. And then they give me the all-clear to take the drug or not.
 
So you have to wait for that as well?
 
Yes. Yes, that’s why it has to be on certain days, because it has to be couriered and etcetera.
 
And, but in terms of personal results, do you get any of those back at all, about how you’re doing?
 
Except for my height, weight and urine sample, that’s pretty much it. They don’t really tell you what else is going on. I wouldn’t mind to know what’s going on, but it’s quite hush-hush sometimes. But sometimes they do try, but it just doesn’t make sense.
 
And would you like to know the results of the trial overall?
 
It would be quite nice to know, just to kind of show, “Yes, you’ve been doing this, you’ve been doing this. Your levels have been going up and down, up and down.” Because in the place in area they thought I had another thing, and they would tell me the results. They would tell me if something’s up or if it’s down or… But it seems to be very quiet.

 

 

At the end of the trial Alexander thinks he will be taken off the trial drug, but if his health...

At the end of the trial Alexander thinks he will be taken off the trial drug, but if his health...

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Do you know what will happen at, at the end of the trial?

At the end of the trial, I think I’m coming off it for a while. If it works, if I start deteriorating from the drug, it means they’ll try and get me back on to the drug. I know if I come off it they won’t be able to bring me back in to it because they’ll be kind of arguing the point. But if the drug still doesn’t get licensed, the NHS can get me on to it. My doctors have to appeal to the NHS Trust, to say, “This drug works fantastically for this patient. Can we keep him on it?” And they’ll pay for it. So that’s an ongoing thing again.
 

 

Having a quiet area for young people to study Alexander feels would be really helpful when they...

Having a quiet area for young people to study Alexander feels would be really helpful when they...

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Yes. But the problem with the hospital, where, because it’s the child’s ward and it’s a child’s hospital, there’ll be kids running around playing. So it’s quite frustrating when you’re trying to read or do some work when you have screaming kids around. You kind of struggle along. So if they had something for that, it would make life a bit easier.
 
So you think like somewhere for you to study [yes] for your school and that?
 
Yes, even, even like a quiet room for people over the age of 15 just to work, because there’s a lot of people who probably have the same problem, not even on trials.
 
I would like them to kind of speed it up too. Because, as I said, you lose a day. A day doesn’t sound like a lot but you can, you can lose kind of essays or anything, college or university applicants, interviews. The list is endless. So if they could speed it up and kind of fine-tune it for ages, it would be a lot more easier.

 

 

Alexander says if you are going to take part in a trial make sure you understand the jargon that...

Alexander says if you are going to take part in a trial make sure you understand the jargon that...

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Get as many opinions as you physically can, not just from your doctor. If you have a family friend who knows about this kind of stuff, speak to them about it. Because the jargon they give you is horrific. Googling, dictionaries don’t have half of it. So you do really have to know what you’re on about. Certain people swear by their drug trials. Some people go, “No.” I’m still kind of undecided. I’m hoping for the best. And maybe nothing will come out of it. Something may come out of it completely. It’s a really open sort of thing. So keep your mind wide and give it a go, if you have to. 

 

Taking part in a trial can mean extra hospital appointments, missing social activities, and...

Taking part in a trial can mean extra hospital appointments, missing social activities, and...

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Would you take part in another drug trial?

Not if it was not needed. If that makes sense. If it had to be done, yes, I would. But out of choice I don’t think anyone would ever take out another drugs trial, because there is so much messing around and so much answering to everything you do. It’s quite frustrating going, “Yes, I want to go out.” “Oh, you have to check the trial now.” So, yes, that’s…
 
And in terms of school and things like that, how does that fit in?
 
It does kind of knock it down a bit because you do have to really work out what’s going on with the school. Because you will miss a couple of days once you’ve taken the drug because you do feel horrific. You don’t want to be dealing with Philosophy or English. So you struggle on and then, so you do miss a couple of days out. And then if you do get ill you have to go back to hospital. So you do kind of feel like you’re not getting a fair c- whip of the –
 
Crack of the whip [laughter].
 
Yes, so you kind of have to work around that. So you do work five times harder than, well, five, a couple of times harder than everyone else. And they’ll be going out, going out to the pub or anything and you’ll be, really kind of wanting to do it, but you have to kind of catch up. And even if you do catch up, people will still be doing better, and they’re doing less than you. So it’s a bit on the frustrating side but you have to learn to deal with it.

 

 

Alexander would like to know if being in a trial has helped other young people with arthritis.

Alexander would like to know if being in a trial has helped other young people with arthritis.

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Do you know many other participants?
 
No. I, I’ve met two by passing. One who sat next to me once, because I had to get, had to a day ward with serious amounts of effort, and I spoke to him for a couple of minutes. But he was just off as I was coming in. So that was definitely a bit weird. And then I met a 4, well, a 2-year-old girl even. She’s 4 now. But she was just coming on a trial, like my fourth visit. So she was in pretty much the same state as I was in, but she was a lot younger, so she had definitely a lot longer to kind of get used to the fact of this is happening, that’s happening and that’s happening.
 
Would you like to have met anybody your own age?
 
Sometimes, sometimes not. Because, fair enough, I’m, I’m quite like a person who likes to keep their stuff, themselves to themselves. But I wouldn’t mind seeing other people’s opinions. And, is it helping them? Is it help, is it making them worse? Is it doing them, what, have they changed?

 

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