So a healthy diet is good for all us and whether you’ve got arthritis or not, eating the , a healthy diet is important. There are some things that are particularly good for somebody with arthritis. So the two things that we would suggest if a young person asks me, "Is there anything I should eat?" is calcium containing food-stuff, so your yoghurt, your cheese, your milk etc. Those are good for your bones and the bone strength is very important for young people with arthritis. So sometimes if young people are saying, "Oh I don’t eat any milk, any cheese, any thisquot; sometimes we will put people on some calcium supplements because of that. But ideally taking it in your diet is much better. The other story is fish oils and they have been shown to have some anti-inflammatory action and they’re also good for your heart and good for your bones and so if young people want to sort of do something about their diet, those would be the two things that I would say are good. We do get concerned when young people talk, often their parents, about excluding a lot of things from their diets because again it’s different from an adult diet. These children and young people are growing and developing and they may need the nutrients of a , you know a balanced diet. So I think in any dietary change needs to be discussed ideally with the rheumatologist or even being referred to the dietician.

But exercise is so important, there’s very few times that we tell people not to do anything anymore because actually we prefer them doing things than not doing anything. Often our physiotherapist will liaise with the martial arts instructor or the PE teacher or the sports person in the sports centre and just advise asjust regarding joint protection. But there’s often more benefit of the exercise against the risk so it’s just sometimes tailoring exercise accordingly. So it is important to get the advice from the right person. There used to be ayou know you must not do any exercise because it will damage your joints. That’s wrong advice and you need your exercise both for your heart as well as some impact for your bone strength, so it is important to get that balance but getting advice from the physiotherapy team is very important.

Biologics are the latest ‘kids on the block’ in arthritis. They’ve been used many years in adult arthritis. In paediatric arthritis we have to wait a while, they’ve been tested in adults before we can test in children. But we now have quite a number available. Biologics are much more targeted treatments and working much more specifically on the agents that are causing the problem. So one of the big players in the inflammation is TNF – it’s called tumour necrosis factor – and the key, the first biologic that was licensed for use in juvenile arthritis is etanercept (or Enbrel), and it’s an anti-TNF agent. We’ve now got many more and they have, they vary in which type of juvenile arthritis they’re more effective in sout most young people will go on etanercept first and after that then depending on their type of arthritis, but infliximab, tozilizumab is primarily with the systemics and adalimumab are the key ones used in the UK at the moment, but every year they’re increasing the number and again they are the, they have really changed our management of arthritis. So ten years ago we would have several young people in wheelchairs in our clinics and everything. I haven’t seen a wheelchair in my clinic for a long time with someone with arthritis because of these much more effective treatments. So every year we’re seeing advances which is great, and as I say ten years ago the pattern of the arthritis was very different to what it is now.

OK so steroids are extremely useful drugs because they work very quickly and are very potent and strong anti-inflammatory drugs. The problem is, however, they do have significant side effects in the long term. So in children and young people with arthritis one of the issues that doesn’t affect adults is the effect of steroid on growth, and so again we try and limit our use of steroids and thankfully now we’ve got many more effective drugs that can take over once the steroids have been used in the acute setting. So the commonest use of steroids now in juvenile arthritis is primarily using it directly injecting it into the joint – called inter-articular steroid injections – will be done, if we do a lot of them, will be done under general anaesthetic or if we’re doing just one or two will be done under local anaesthetic, and they’re very effective, controlling the inflammation within in a single joint and will last three to four months benefit.

The next, steroid tablets… we used to use them a lot but now we have got more effective treatments thankfully so we prefer using those. We can give steroid into a drip, usually over three to five days; that’s particularly common in systemic onset arthritis where they may be very unwell with high fevers and their arthritis and rash and feeling very unwell with anaemia, and to get control of that disease quickly, steroids are very effective and then we switch them onto whether it be methotrexate or another medication to take hold, rather than putting them on long term steroids. The problem with long term steroids in young people is the effect on growth, the effect on their bone strength because the bone strength is built up until your mid-twenties so this is a critical time for the skeleton being formed and steroids particularly can affect that. But there’s always a balance because if you leave the disease uncontrolled, you also have those risks, so there’s a balance of using steroids carefully and at the correct time, but as I say over the last ten years using them a lot less because of the better treatments now available.

So DMARDs is a name, so – disease modifying anti-rheumatic drugs – and there are many in adult arthritis but in juvenile arthritis there really is only one and that is methotrexate. All the other DMARDs as used in adult arthritis have not been shown to be terrible effective in juvenile arthritis except potentially sufasalazine which is still used by some paediatric rheumatologists, but really methotrexate is the only one that has been showing in that type of arthritis. As I say there are other in the adult forms of arthritis all the DMARDs that they’ve used but in juvenile arthritis it’s methotrexate, and that would be ourhen non-steroidals don’t control things or joint injections and in anybody who has got , you know four or more joints affected, we really have a low threshold of starting methotrexate fairly early now to get control of the arthritis.

o from the point of view of the treatment plan in arthritis again will vary depending on whether this is juvenile arthritis or adult type of arthritis because many of the drugs that work in adult arthritis don’t work in juvenile arthritis, so hence the importance again of getting the diagnosis right from the start. But the first line of treatment if somebody came and you diagnosed an arthritis in the young person, the first treatment would usually be a non-steroidal anti-inflammatory drug, a NSAID, of which the ones in young people that can be used again are much fewer than in adults and the common ones are ibuprofen (Nurofen), feldene (Piroxicam), naproxen, Voltarol (diclofenac), indomethacin. We tend to use piroxicam mostly in young people because it’s a once a day dose so you don’t need to remember any other doses, so it’s easier for school age children but everybody will be slightly different. The anti-inflammatories, they are what they says on the tin. They are… work against the inflammation and help the pain and stiffness; they do not cure the arthritis, they help the symptoms. So these are symptom relievers and in the younger child, younger young person, it does take a while for those anti-inflammatories to work whereas in adults they’ll work very instantaneously so again different ways that our bodies use drugs. But so regular non-steroidal would be the key treatment. Paracetamol is a painkiller but it is no effect on inflammation, so if the pain is due to inflammation then NSAIDs are the one drug of choice. But you can use paracetamol on top of ibuprofen if necessary. If you’ve got the headache on top of the arthritis you take the paracetamol but the non-steroidals are the ones that will help the pain and the stiffness which are the common symptoms in inflammation.

One of the, again differences between adult arthritis and juvenile arthritis is the long term outlook. So if get adult rheumatoid arthritis that, you have that for the rest of your life. Whereas if you have juvenile idiopathic arthritis there is a chance that it may go into long term remission into adulthood and so you won’t have ongoing inflammation into adulthood. Now that will vary according to the type of arthritis that you get but itdepending on the range, but you usually between sort of thirty to fifty percent of young people it’ll go into long term remission, but remembering then that leaves between fifty and seventy percent that don’t and have ongoing and the important things from a young person, a point of view I think is to realise that it can go away but it also can come back and that if they get symptoms even its seven years down the line since the last, to seek help promptly so that you can get something done about it and to say, you know to know that they’ve had juvenile arthritis as a child and, you know has it come back.

One of the challenges in arthritis I think for both the young person as well as for people involved in their care, whether it be a school teacher or a health professional or whatever, is that arthritis is characterised by good spells and bad spells in most cases, and young people will go through what we call remission or good spells and then relapse and that changing course can be difficult. From the outside I’ll think, ‘Well she was OK yesterday, what’s wrong with her today?’ and not understanding that yes arthritis can relapse like that. Even in the course of a day the arthritis symptoms are usually classically worse in the morning; improve as the day goes on. So maybe terrible in first class of maths and yet be fine by two o’clock and then the interpretation sometimes is that they’re putting it on, whereas that’s the classic – history of morning stiffness and , in joints and things, easing as the day goes on. Whereas mechanical pains are more pain due to a damaged joint or, and things can sometimes be worse at the end of the day. So again doctors and nurses will take that history of pain – when things are worse, when things are better and then this, the relapses, after long periods of remission. From a young person’s point of view that can be very difficult because the disappointing fact or the impact of that relapse can be quite challenging from an emotional point of view and particularly if they’ve been well for two or three years and then all of a sudden it comes back with a vengeance but unfortunately that is the characteristics of these types of arthritis.

nother difference between juvenile arthritis and adult arthritis is an association with the eye. In adult arthritis they get eye problems where they get a painful eye. In juvenile idiopathic arthritis they get a painless eye problem. So it’s more difficult to diagnose because they don’t feel anything, it doesn’t look red, but they can start getting reduced vision. Now usually by the time teenage years kick in the teenagers are aware that their vision isn’t so good. It’s more of a concern in the little children who aren’t aware and they lose a lot of vision before it’s caught. But some young people do get this problem and it’s called chronic anterior uveitis and they may need biologic treatment to treat their uveitis as well as their arthritis. The problem with the uveitis is that it can go on into adulthood and need regular check-ups with the eye specialist, so it is important for both young people

f they have had eye problems in the past, they notice something with their vision, to just have a low threshold of getting it checked out because these conditions can be treated but the problems are whenever they’re left untreated and then more problems set in. And again there’s many more effective treatments we have for the eye disease compared to not that long ago, but it is a difference between the types of arthritis because the adult arthritis tend to have painful eye problems whereas the juvenile have painless.

If symptoms get worse at any time, I think again it’s important for the young person know how to contact their clinic. Now inall clinics will be different and it might be contacting a helpline, it might be contacting the nurse specialist but how do you get advice from that particular clinic. So most clinics in young people will tend to be that’s a natural thing of telling them how to do that, and getting advice and it may be advice over the phone, it may need a review appointment, but it is important to seek help if they think their arthritis is beginning to flare because it may need, you know, increasing the treatment, it may need a different treatment etc. Sometimes some of the symptoms are more ill-defined. Symptoms maybeit might be due to something else, they may have a virus infection, they may haveand it may not be anything to do with losing control of the arthritis, so important to get it checked out.

OK and it’s straight to the rheumatology team, not to the GP if they think it’s

Again that will vary as to at what stage the young person is at. If they’re newly diagnosed they may not know which is my arthritis, which is a virus, which is
whatever; and going to the GP and then the GP can decide, you know help them decide which is the case. In somebody who has had arthritis for a few years they usually are very good experts to work out is it the arthritis flaring and then , you know, if it is the arthritis flaring then definitely go straight to the rheumatologist. But again it is difficult to generalise because all the clinics will be slightly different but important for young people to ask that very question, ‘What do I do if my arthritis gets worse? Do I contact you or who do I contact?’ and usually the clinic then will give that local advice.

Just some small pieces of advice I think to young people when they come to clinic , just to start practising, asking their own questions because all of us when we go to a clinic or something it all, you know, it sort of goes in one ear and out the other and you forget what you were going to ask and you’re out the door and then you think, ‘Oh I didn’t remember,’ is to write things down, particularly when young people are coming in on their own for the first time. I usually encourage them to write their own questions and the parents to write their questions but for the young person to ask the questions or queries. And that can be anything and you know the questions will range from disease specific to ‘can I have a tattoo?’ or something. But it’s encouraging them to take part and ask questions, so I would encourage young people to have a little list or think of the questions before; when they’re coming in on the train or the car, to write it down. When young people come in on their own and their parents come in after, a useful thing I find to do is to get the young person to tell the parent the plan of what’s happening next. That way I know that they’ve understood what I’ve talked about but also it’s that practising skill of discussing what’s going to happen next and demonstrating to the parent that they are competent in coming in on their own and are taking responsibility etc. So again there’s just some of those little skills that are useful for young people I think to practise.

When young peopleobviously I see children from a young age and as they grow up and as they enter the teenage years we recognise the need for the young person to be, have some privacy and some time that they can ask their own questions. And one of theso we would encourage young people to consider coming in on their own for part of the visit and in the whole most young people appreciate that time. Many parents find it very difficult to let go and what I tend to say is that the clinics are safe places for young people to practice talking to professionals. This is a good skill to learn for the world of work when they go for job interviews and that confidence about talking to professionals. Now some young people bring their friends, some young people bring their boyfriend/girlfriend. Some bring their parent in because they want them to be there as long as the young person is the person who is choosing and sometimes from a doctor point of view it’s difficult to know who’s actually choosing to be in the room. When it comes to then discussing some of the more sensitive issues, so sexual health, alcohol etc, that can be quite challenging to talk when the parents are around because as a doctor I don’t know the, always the relationship and sometimes young people will not disclose important health related issues if the parents are in the room. So we always give them the opportunity and most young people do take it and we support the parents in adjusting to it and; but one of the important things for both young people and their parents to know is the rights for confidentiality and that is irrespective of age and they have the right to confidentiality. Whatever is said in the room is kept in the room with the exception that if the young person says something that they will harm themselves, are being harmed by someone or the young person is going to harm somebody. Those are the three times that I would have to break confidentiality but I would always tell the young person first and I would say who I was telling, when, etc because many young people worry that the health professionals go behind their back and won’t tell them andbut that explanation must happen with all young people and with their parents so the parents know that theythat that is respected because some parents do think that they should be told everything that is said within the room and that isn’t the case. And I certainly find that only until that is the confidentiality is assured will then some young people start opening up and it’s often the young people who need it the most who either aren’t getting on with their parents or are struggling with sort of health risky behaviours, need that time to open up.

OK so rheumatology clinics again, there’ll be a wide variation and again paediatric rheumatology clinics will tend to be somewhat different to adult rheumatology clinics. One of the big differences is in paediatrics we have a lot more time to spend with the patients and there will be a lot fewer patients in one clinic. And it is one thing that young people find sometimes difficult as they move into adult services is that there is less time, there are more people etc. The argument obviously for more time in paediatric clinics is that these are young people who are growing and developing and not yet adult and as well as monitoring their arthritis and their treatment is monitoring their growth and development. As young people get older there is alsowhereas in the younger children we see the family together, as they grow older we give them the opportunity to be seen on their own for part of the visit and then the family comes in at the end, so it’s almost like two clinics for the price of one but again that is a longer clinic, a clinic appointment. The, again it will vary from place to place but in paediatric and adolescent rheumatology clinics it does tend to be a multi-disciplinary clinic so in my young persons’ clinic there’ll be the nurse, the occupational therapist, the physiotherapist, the transition co-ordinator and then the doctors, and the young people will usually mostly, see the doctor but then a variety of the other professionals depending on their needs and some time will be spent with the doctors, some time with the nurse if necessary and so it will vary again from area to area. It is important, again in young people’s clinic whenever they are still growing, young people will be seen regularly to monitor that growth as when young people are adults, there’s less change – they’re not fully grown and therefore don’t need to be seen as much. But most young people in our clinics will be seen somewhere between every three to six months, those on more of the stronger drugs, they will be seen more often. Those who are well will be seen less often but with the understanding that if they ran into problems they contact us and we’ll bring their appointment forward.

OK another imaging that young people may come across is our DEXA scans which measure the density of their bones, so basically the strength of their bones and it is knowing that in juvenile arthritis and indeed any arthritis affecting young people there is this added risk that they can get thinner bones. You build your bones until your mid-twenties. After that that is as good as you’re ever going to be so it’s a really ideal time to keep the bones as strong as possible and we know that, certainly in juvenile arthritis, they carry a risk of, an increased risk, of getting osteoporosis. DEXA scans are the way of measuring how strong your bones are. Again it is important particularly for the younger
nder eighteen year olds, that it is done by a paediatric service because interpreting DEXA scans in the growing skeletons are different to interpreting them in an adult, and you have to use different ranges etc. In some places they’ll be routine, in some others they won’t be routine and will only be done as required but they are a very simple x-ray, type x-ray – it takes I think about ten/fifteen minutes but relatively easy to do, no injections but it will measure how strong the bones are.

Ultrasounds are also used diagnostically and again it’ll vary from area to area as tof you have very good access to MRI scans, MRI scans tend to be used and ultrasounds not. In other areas MRI – waiting lists are too long and ultrasound is used. Ultrasound is a much more dependent on the person doing it. So it does tend to be certain centres where they develop the skill to look at others particularly in smaller joints. So the younger the child, the more skilled you have to be as an ultra-sonographer. But it is very useful to determine whether there is inflammation or not in joints but it will vary from area to area as to the skills of the sonographer so some people will find they have more MRIs and some more ultrasounds.

But an MRI, I think in the lastf I think about the sort of revolutions in our specialty, MRI is one of the big changes in the last five to ten years of imaging arthritis. So as Ix-rays only show the bones, they don’t show anything else so they will only show if the arthritis has caused any damage to the bones. By the time that happens that’s quite late. MRI is, shows you everything. To do an MRI looking at arthritis a young person will need an injection of a dye called gadolinium and that will show up the actual inflammation in the joint. It will also show the cartilage lining the joint, it will show the bones, it will show the tendons – so very, very informative. And the MRI scans are particularly useful in certain areas of the body, so your hips, because you can’t see any swelling in hip arthritis; in the jaw, in TMJ arthritis – again you can’t see any swelling, and it will tell us whether the pain in the jaw was due to mechanics of pain or due to inflammation in active arthritis. And some of the hips, ankles also, the subtalar joint which is the joint underneath the ankle – difficult to see sometimes swelling within that, an MRI scan is particularly useful. So we areit picks up arthritis a lot earlier and we are doing it more often so young people may have that experience of an MRI. Having it , the issues mainly that the young people tell me is very noisy, it’s not an x-ray, it’s a magnet but it’s very noisy and it’s advisable to take some of your own music because it’s also very boring because you have to lie still for twenty minutes or so, so the young people do tend to prefer to take their own music and lie there as long as it’s not too much and they start dancing. But yes

We do do tests to decide which sort of arthritis it is as well as to exclude other conditions. So there’s usually a case of doing some blood tests and if necessary x-rays. X-rays will not show arthritis as such. If they’ve had joints, pain for a long time or arthritis, uncontrolled arthritis for a long time, x-rays will show unfortunately changes, but x-rays are often done to rule out other causes of joint pain and , but usually that combination of blood tests plus or minus some x-rays will have the diagnosis and either the young person will get that diagnosis in the first visit or then return and be told that diagnosis and given the opportunity to ask questions, you know get information , written information about whatever type of arthritis it is as well as meeting the other members of the team and that will be the nurse specialist, the occupational therapist, the physiotherapist and to learn about what rheumatology teams can do for young people with arthritis. Now as I say the experience will vary according to the clinic but that would be very standard practice in paediatric rheumatology clinics.

OK so when a young person sees a consultant – now they, in paediatric rheumatology, so if they’re under sixteen and in some areas under eighteen they would go to a paediatric rheumatologist and they’reot as many of those in the country as adult rheumatologists. So the experience may differ depending on whether you go to your paediatric centre or an adult centre and a paediatric rheumatologistI’ll speak from my own experiences that they will, certainly in paediatric rheumatology, they may be seen either by the consultant or by one of the trainees but certainly in paediatrics they will always see the consultant eventually within that consultation. A history will be taken and that’s when questions will be asked to work out the cause of arthritis or to diagnose arthritis and find out what, how it’s affecting the young person etc and then they will be physically examined and that’s examining the joints but examining the rest of the body – listening to heart and checking the tummy and feeling for any glands, all of which tie into working out which type of arthritis it is and getting the diagnosis correct at the end. So sitting down talking and getting to know the young person, finding out how the symptoms etc are affecting them, taking their medications they’re on, what they’ve tried, if they’ve tried any complimentary medicines; if there’s a family history of any arthritis etc and then examination. And as I say usually at the end, if there is arthritis the doctor will be able to say there is arthritis, they won’t be able to say what sort of arthritis and that’snd further tests will be necessary .

When young people develop any symptoms, I think of joint painthe first thing I think is to remember that arthritis is only one of many causes of joint pain in young people and not to imagine that if you’ve got a sore knee it necessarily is arthritis but it is important if it continues on, isn’t related to any injury etc to get it checked out by a doctor. Now some young people will not want to complain of pain or symptoms and just put up with it. But if it is continuing it is wise to see a doctor and go to the GP and ask them to check them over to see if there is any concern. Arthritis is diagnosed by an examination, there are no blood tests that diagnose arthritis. It helps decide which type of arthritis but arthritis is diagnosed by physical examination and taking the story from the young person. Now that takes skill and we’re hopefully improving awareness amongst doctors and health professionals about how to examine young people’s joints and take good histories so that they can decide whether somebody’s got arthritis or not, but it is important that they seek advice regarding it.

From a point of arthritis in children and young people it is a painful swelling of a joint. And that is due to inflammation of the lining of the joint and then causing increased fluid within the joint and that’s what causes swelling and it’s painful and slightly warm and albeit not very red and if it was very red you’d worry about it being infected. But that’s really the simple definition of what arthritis is. Obviously there are then different types of arthritis and I think the most important issue with young people with arthritis is that it is a different arthritis to what adults get. And the main form of inflammatory arthritis or arthritis due to inflammation in young people under the age of sixteen is called juvenile idiopathic arthritis, of which there are seven types. But that is the main umbrella term for arthritis affecting young people. Then once you’re over sixteen, then yes you can get the more adult rheumatoid arthritis – ankylosing spondylitis. They are different diseases to juvenile idiopathic arthritis which is the commonest inflammatory arthritis in young people.

he definition of arthritis in children has been an ongoing issue for many years and they do like to keep changing it. The very old definition was called Still’s disease defined by Frederick Stills way, way back and then came juvenile chronic arthritis and the most recent internationally approved term is juvenile idiopathic arthritis. Idiopathic being a term that only doctors use and means we don’t know what causes it. And hopefully one day with research and everything we will be able to drop that term because we will know what causes it. But in an attempt to help doctors and researchers to work out the cause we need aall the professionals to agree on a term and so that we’re all talking about the same thing. Rheumatoid arthritis is the adult disease; you cannot get rheumatoid arthritis under the age of sixteen. It is an adult disease that primarily affects the sort of forty year old plus although younger, younger adults can get rheumatoid arthritis. But JIA is the main internationally approved term. There is a confusion in that the Americans do call, still call it sometimes juvenile rheumatoid arthritis but because of this confusion with the adult internationally there’s a move to JIA – juvenile idiopathic arthritis.