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Long term health conditions (young people)

Finding the right medication

All but three people with long-term conditions that we talked to were taking medications every day. A young man with arthritis is taking seven tablets a day, some to deal with the side effects that come from taking another drug. A young woman with cystic fibrosis said that when she was 12 years old she was taking nearly 80 tablets, including many vitamins, a day; now she takes 6. Some also had a regular routine of physiotherapy exercises (e.g. for cystic fibrosis), dialysis, or IV treatments. 

Most of the young people we talked to said that they coped well with their medications and treatments. Because we talked to people with lots of different conditions, with different treatments, we will concentrate here on 'the taking of' medications, rather than discussing the different drug regimens.

Finding the right medication

Many of the young people we spoke to had tried several medications during the search for their best treatment. A young woman with epilepsy had taken so many different drugs that she sometimes "felt like a rat in a cage". Medications may be changed around in search of the drug, or combination of drugs, that will best help control the condition, alleviate symptoms and minimise some of the side effects. It can take some time to find the drug treatment that really works. It can also be very discouraging to be on an ineffective medication, or getting side effects that make daily tasks difficult, e.g. going to school or even getting up in the morning. Some people had simply refused to continue taking a particular drug because of its effects. The side effects that particularly concerned young people were putting on weight, losing weight, sickness, facial puffiness, fatigue, headaches, lack of concentration and sleep disturbances. Some people pointed out that the side effects listed on the information leaflet are possible, but certainly not guaranteed - so don't let the list alarm you.

 

Her medication for epilepsy (Epilim) made her gain weight, but she felt too embarrassed to...

Her medication for epilepsy (Epilim) made her gain weight, but she felt too embarrassed to...

Age at interview: 29
Sex: Female
Age at diagnosis: 15
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Well, certainly having to take medication every day, every morning and every evening. And that is a big change. You know, it's not something that a normal teenager has to do. And it does make you feel a bit different. That if you have, if you go to a sleepover or if you stay at somebody's house, you know, you have to take these big tablets and nobody else does. Also the tablets had side effects and they, they made me put on a lot of weight. Which, when you're a teenage girl, is something you don't want at all. And I blew up like a balloon, you know, with a lot of weight. But that was something that was never discussed with my doctor.

They never told you or warned you that you might put on weight?

No, they never warned me it was a side effect. And I never spoke to them about it. I was really quite embarrassed about it. So it was the last thing I was going to discuss with my doctor, that, 'Hey, I'm really fat and I'm getting picked on because of it'. I know now that, you know, I should have told my doctor that it was making me unhappy and that we could have tried something else. And that's what I would do now. But as a teenager I didn't, I didn't feel like I was able to do that. So, so that affected me.

So the weight problem you had, that went on for quite a while?

Yes, that's right. Because I stayed on that treatment for a number of years. And again I didn't realise that, you know, I could have chosen a different tablet and the weight wouldn't have been an issue and, you know, I wouldn't have had to be unhappy for so many years because of it. So, yes, that went on for quite a while. And I do wish that I'd brought it up with my doctor and, you know, we could have changed the tablet and maybe not had those problems. So, yes, when, when I came off that tablet and chose another one, I lost a lot of that weight. And it really improved things. You know, I got a lot of self-esteem back. So that was a good time.

 

She refused to continue on a drug that made her feel sick all the time. Doctors eventually gave...

She refused to continue on a drug that made her feel sick all the time. Doctors eventually gave...

Age at interview: 21
Sex: Female
Age at diagnosis: 12
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And I went into [hospital] because they wanted to sort out the methotrexate problem, because they said, 'You can't come off it because we don't have anything else to give you'. And I said, 'Well I'm not taking it any more because '' It went on for about a year the sickness thing and nobody really cared. I mean, I cared and my parents cared but the doctors they weren't really too bothered. They said, 'If you're not on it then you know you're, you're not going to be healthy enough'. And, I didn't care. I didn't care if I couldn't do anything, I just didn't want to be sick any more.

So I went in and various different doctors came to talk to me 'cos I was under Professor [name] at [hospital] and, and she has a huge team and  they all came to talk to me, all of them. And then she came as well so, you know, the big top dog, and she spoke to me and I said, 'No, I'm not taking it. You, you can't make me take it because I don't care if I'm, if I'm under 16 I'm, I'm not going to take it'. And I just said, 'No'. And they said, 'Well we'll give you anti-sickness tablets'. And I had tried those, they didn't do anything. I said, 'But they don't work so I'm not taking it'. So they eventually [laughs] sort of, they listened to me. I mean it was about three weeks I was in there and I had intensive physio and I had hydrotherapy in the morning and then at lunchtime, I enjoyed all that, that was all good. 

And then they'd put me on indomethacin which I'm still on now, which is I think the best drug for me. I don't know how it works for other people but it got rid of the stiffness, it got rid of the swollen joints and I could get up in the morning and do whatever I wanted straight away. It got rid of all of that. It wasn't so good of getting rid of the sort of, the general day-to-day pain. I still get localised joint problems but it took away all those sort of feelings of, 'Oh, I can't do it today'. And that was great, so I was really glad I put up the fight to get off methotrexate because it was really worth it.

 

Has tried very many treatments over the years to control her chronic eczema and now knows what...

Has tried very many treatments over the years to control her chronic eczema and now knows what...

Age at interview: 22
Sex: Female
Age at diagnosis: 11
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Well I have chronic eczema. It began to get worse my teenage years and I am managing it well now. But over the years I've had lots of different types of treatments for it. And but most now I have kind of narrowed down to a kind of things that I know work for me and things that don't, and I know that's what work for me. And if, and if I go to a new doctor and they try and give me something else then I say, 'Well no actually in my experience I know that hasn't worked for me'. 

On a day to day basis my condition it's ' in terms of how it makes me feel about myself, it's more it's a very kind of outward thing like people can see that my skin around my eyes is really red and raw. Sometimes I have eczema around my mouth and that leads to infections and I have to have antibiotics to target the infections because I get spots and things around my mouth which isn't very nice. 

And sometimes I worry that I can't that people are going to look at me. And I can't smile properly when my eczema is really bad and I have to like stop myself from laughing and that makes me feel quite down. And I felt you know that's kind of comes and goes since I was at school really and that still happens occasionally. 

But when my eczema is really severe and I'm scratching all night and just feel like there're ants on my body, I do take antihistamines.

Which just calms everything down. But when I say that to doctors, they say. 'Well we don't treat eczema with antihistamines'. But that seems to be their line on it but it helps me, so' And I'm used to taking them because I have mild hay fever anyway so it kind of you know ' I found that it really helps. In addition to that I've had different types of steroid creams, steroid creams with antibiotics in and ointments for some parts of my body, and creams for the others. Paraffin-based ointments that are horrible and make you sweat and they just make my skin worse. And then one particular kind of range of like lotions and soaps and things that you can get on prescription but are really, really mild and they're oatmeal based and that was just amazing. Changed everything for me [laughs].

Have you tried any alternative or sorry complementary medicine?

Well I'm quite open to that idea. I think the fact that I am very I know that it's not it's ' there's something I don't know what it is but aggravates my eczema and causes it ' but I know that there's certain things I can do to help it. And I know that my diet's a big thing part of that and you know just drinking good water. So I see that as kind of complementary.

A young man with arthritis knew that his medication had not been fully researched in children but felt that it was worth the potential risk of long term side effects in order to be in remission and feel so much better. Even when there is a known risk young people may be happy to take the medications because alternatives do not exist.

 

He does not complain about the side effects of his HIV treatment because he is grateful for the...

He does not complain about the side effects of his HIV treatment because he is grateful for the...

Age at interview: 26
Sex: Male
Age at diagnosis: 17
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Yeah. I mean it's amazing, it's amazing the drug treatments. I would not be sitting here now if I hadn't started triple combination within the space of one year. Yes it keeps the virus minute within my body, but it's still there and you don't know how long they're going to work for.

Initially on the drug treatments I had side effects, skin rashes, complaints, dizziness, tiredness, they eventually wore off as time went on. But they still don't know the long term side effects of efavirenz which causes sleep disturbances and you know weird dreams and'

And do you get that?

Yes, very much so.

What's that like?

Just crazy dreams, I can have six, seven dreams in one night, which can be a little bit weird.

Is that worrying or?

I'd, I've always dreamt, dreamt a lot as a kid anyway. I always had vivid dreams as a young boy so'. Yeah not nice but you know, it's a small price to pay though. I mean there's countries not even able to afford the drug treatments I'm on. So you know it's not something I moan about, I'm very grateful for being given the opportunity to live.

 

She needs regular blood tests to monitor her liver function because the drug she takes can damage...

She needs regular blood tests to monitor her liver function because the drug she takes can damage...

Age at interview: 16
Sex: Female
Age at diagnosis: 7
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Sarah' Oh yeah. First when I was on the steroids my appetite did increase a little bit and I did go a bit bigger. And then as soon as I was taken off them my weight went back to normal because I am quite lucky I can eat and eat and eat [laugh]. And nothing.

What about your blood test?

Sarah' When I first went on the steroids and the methotrexate I had to have blood tests every week. And then it went to every fortnight, every three weeks and then every month. And now I have them every six weeks which they are looking at my liver function because the tablets that I'm on they can affect my liver in some way and. But at first I didn't like injections. I didn't like to, like them but now they're just second nature. I don't even notice happens when I'm having them [laugh].

Anything else that, about side effects of?

Sarah' It's not really a side effect but on the tablets that I'm, that I'm on they, what's it, reduce my immune system is it? They reduce my immune system so I am more vulnerable to pick up  colds and viruses. And that's why I take the folic acid every day to boost up my immune system to fight bacteria. That it, bacteria?

Ok. What about drinking alcohol?

Sarah' Well they told me that I can have.

Mother' In the beginning you weren't to touch alcohol really at all.

Sarah' Well at the beginning I weren't allowed to touch alcohol at all. They told me that it could affect my liver and.

Mother' No pregnancies.

Sarah' And you can't get pregnant on these tablets at all because it can. The baby that's growing inside will be deformed in some way 'cause they are really strong. And, but now they said that I can have on occasions a little bit of alcohol but not to the extent that you are really drunk [laugh].

The number, or dosage, of the tablets can vary depending on how well you are doing. Some young people said they could tell if drugs were working by how they felt, but they sometimes worried whether they were taking the most appropriate drug or the correct dosage. 

Many of the young people we interviewed stressed the benefits of finding the right treatment. People particularly appreciated medication that relieved them of constant pain or stiffness, allowed them to attend school or university regularly, or helped them feel more in control of the condition. 

 

He had taken various drugs for his arthritis without much success, until a consultant suggested...

He had taken various drugs for his arthritis without much success, until a consultant suggested...

Age at interview: 17
Sex: Male
Age at diagnosis: 7
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We went back to [name] Hospital and I was put on the pain relief diclofenac. And I remember it was quite a long time before, you know, I was still in a lot of pain. And they decided that they'd put me on methotrexate as a, a new method to try and relieve the pain and get my, get me back up to remission. And I was on that for quite a long time, for about three years. And I can remember that it wasn't really working and I was still in a lot of pain and I was, I was managing to keep at school but it was increasingly difficult because I wasn't sleeping at night.  

And I remember they invited me to this conference, look at difficult case studies and try and find a solution. And that's when they put me in contact with [city] 'cause they recommended that the healthcare, the doctor, Dr [name] there was a specialist there, the specialist team. 

So and I can remember going for the first consultation. I was really white and pale, really struggling to walk and I [laugh], for some reason I thought that I wasn't poorly enough to go to [city] 'cause I thought it was a children's hospital and there would be all these poorly people. I remember the first consultation. It was with Professor [name], I think his name is. And they transferred my care over there. And I remember and there was, they continued with methotrexate and I think I went on diclofenac as well. 

And that was in 2003. The methotrexate still wasn't working. It was still on and off 2003/2004, still not in remission. I was still really poorly. And then while it was really bad and, you know it was 2004, I had the steroid injections in the ankles. And had a series of drips, steroids as well. And then I went back on steroids in tablet form. I think it was 2003. And that wasn't very good at the time because being 13/14 at school all my face was swollen up and it was not very nice for all my [laugh] friends and gradually seeing my face blow up 'cause I was on such a high dose. 

And that kicked it into remission in a way but it was still present, still had a bit of pain. And then eventually they, we found out about Enbrel and going onto Enbrel. And they applied for funding and I got it. And then they started me on the Enbrel and I still had methotrexate at that point but it was getting that the methotrexate was just making me feel ill and taking over. And every Friday night I just felt terrible which wasn't very good 'cause I had Scouts on Friday night. And eventually I refused to take it any more 'cause I was just feeling so terrible. So the Enbrel was working by that point and it was getting into remission. And it was a very gradual process but by 2005 it was starting to, you know, into full remission. It was a lot better. I wasn't, started not to notice it as much. Started to be able to do what I used to be able to do' walking, biking to school. And I've been in remission hopefully now for two years. So hopefully with the new medications are working.

And I have to do injections twice a week.

You do it yourself or you need to go to the hospital?

I do them myself. I have, I think it's every six months I have a delivery from Healthcare at Home. They deliver me with the supplies of needles, vials of injections. Then I mix it up myself, the water and medicine vial and then I do it with a pen every Monday and Thursday.

What has it meant to you to feel better now?

It's just meant my independence is back because when I was relapsed in 2000 I started to become independent at 13. And not being able to just go out and think, 'Am I going to be able to do t
 

Only when she saw an epilepsy specialist was she given effective drugs. Since then she could...

Only when she saw an epilepsy specialist was she given effective drugs. Since then she could...

Age at interview: 29
Sex: Female
Age at diagnosis: 15
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The reason I came off the tablet wasn't because of the side effects, it was just because it wasn't working. And when I was a child, often you'll see a paediatrician. So you won't see a specialist or even a neurologist. You know, you'll just see a standard paediatrician who doesn't really have the in-depth knowledge. And when I was 18, again I saw a general consultant. So somebody who didn't have the in-depth epilepsy knowledge. And so I just stayed on that treatment. They didn't really bring up the weight as an issue. And again because I felt embarrassed, I didn't bring it up either. So it was just when I found out, or when I found a specialist, they then realised that the tablet wasn't working, that there were other medications that they could try.

In which way, it wasn't working?

The aim of the tablets is to control the seizures completely. So to stop a person having seizures. And again that was something I didn't know. I didn't know that it was possible to stop these things completely. You know, I, I guess I just thought, 'People with epilepsy have seizures'. You know, none of the doctors ever said, 'We're going to get rid of these things' or, 'We want to get rid of these things completely'. So the aim of the tablets is to do that. And the medications that I were on weren't doing that. I wasn't having many seizures, I was maybe having like four a year, something like that. But it was four too many. So eventually my specialist took me off that medication and chose another one that, that made me have less seizures.

So it's improved, things have improved.

Things have improved, yes, yes.

Another issue when I was younger was the driving. Because having epilepsy, or having seizures prevents you from driving. You have to go for a year without having a seizure until you can get your licence. Now loads and loads of people with epilepsy are controlled with their medication and they do have their driving licence and they've been driving for years. But at a time that, you know, I wasn't controlled. So all of my friends were starting their driving lessons and they were passing their test and, you know, getting their cars. And, and I wasn't able to do that. So I did feel quite isolated actually. And having to rely on people, having to rely on my mum, you know, for many years. It's not nice to, to have to keep asking people to take you places. So I'd really given up hope to be honest of ever being able to drive and ever getting my epilepsy under control. But then I met my specialist and we tried a new medication and it actually stopped the seizures. And I was able to get my driving licence. And that was something that I never ever ever thought would happen.

 

He says that he doesn't need to take his medication but he prefers to take the folic acid and...

He says that he doesn't need to take his medication but he prefers to take the folic acid and...

Age at interview: 19
Sex: Male
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Yeah. Things like my mum is always on me because you know me I don't like taking medicine, medication. My mum's always reminding and it's something that I can actually go without. I can go without medication but just to stay safe I take it. So I could stop my penicillin and folic acid for a year or so. But then things might start to get worse so I just take it to be safe. So I mean that's one.  

So you forget to take your medication or?

Sometimes yeah I forget like it's something that I don't really like. I don't push myself to do because at the same time even though I should but it's not something that because like I said because sickle cell it doesn't really affects me that much now and just a little. But '

So I could actually go without medicine. But I just choose to take it just to be safe. So I just take just so just to avoid having a crisis or something. But my mum always you know persuades me to take my medicine just to be safe.

Information and instructions from specialist doctors and nurses is often crucial in helping to control symptoms and condition. Not knowing what you are supposed to do, and not having a point of reference to compare with, can make people feel very uncertain about handling medications. Finding a doctor or nurse who can explain things in person and answer your questions in a way you can understand helps. A young woman with asthma told us that she had been given leaflets about her inhaler but did not understand how to use it properly until a specialist nurse showed her. 

 

A review with a specialist nurse showed her that she was not using her inhalers correctly.

A review with a specialist nurse showed her that she was not using her inhalers correctly.

Age at interview: 24
Sex: Female
Age at diagnosis: 7
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I've only been a couple of times now but she does the peak flow measure and finds out where you are. And she just talks to you about your current medication. So I mean I was on Becotide and I was finding that it wasn't working as well as it had been so I was given Seretide, the purple inhalers [ha]. And I think, 'cause the first time I saw her I hadn't, I had, I did tell her that my, I didn't think my Becotide was working as well because I was taking it and I was still getting wheezy. 

And... I suppose at that point I thought it was ok to take my blue inhaler daily if I needed it. And apparently it's not because your symptoms should be more under control. And I think just because I was used to having to take it every day I thought that's what you were supposed to do. And no one had told me otherwise. So when I saw her and she said, 'Well you shouldn't be taking it daily. You should be taking it maybe when you're exercising and you know, when your triggers kick in  But you know just, you shouldn't wake up and have to take your inhaler every day' which is what I was doing at one point. So that was quite useful to talk about that and then for her to recommend a different inhaler. 

And then yeah we just talked about what my triggers were and so what I should stay away from. And then how my medication was working really.

What was her advice?

We also, we went through how to take your inhaler properly as well which I know it says on the leaflets but I hadn't, hadn't had anyone show me properly like that before. So I, I'll always remember that, the advice she gave me about how to take it properly 'cause I possibly wasn't getting the most from my, each dose anyway by the way I was taking it. 

Other advice? I think she said, she did say 'Take your inhaler an hour before you exercise rather than just before or as you're doing it because it takes that time to start working.' Yeah they were the main things that I remember.

Just because my, well I was given Becotide inhalers and I think my asthma was getting worse and so it wasn't working any more. But I just sort of, I don't know I just assumed that that meant I'd need to take my reliever more so I was just happy waking up taking my Ventolin and thinking that was the right thing to do.

Were you discussing this with your doctor or no?

No.

And this is why when I went to see the nurse this is what she talked to me about and that's when my dose changed. So I hadn't really spoken to my doctor about it. But he, he did know because I was ordering more inhalers he did know that my, I was taking it more than I used to. 

But he didn't raise the issue with you?

No, don't remember him doing, no.

And because I mean that's the thing when you're not. That's why it's useful for somebody to talk to you about it because if I hadn't seen the nurse. I mean I, you don't really know what the normal thing is and what you should be doing. So when you don't have that information you don't know whether you're doing things properly or not. So I just assumed that it was ok to be taking, waking up and taking my Ventolin because, you know I knew that I was able to take it up to six times a day. So I thought as long as I'm not overdosing I'm not doing anything wrong which I wasn't but I was just not handling it in the correct way [ha].

Last reviewed July 2017.

Last updated May 2014.

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