Arthritis (young people)

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 so…but 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.

But the medication itself I’ve now been put on to the Enbrel, an anti-TNF which, to be honest, has completely and utterly changed my life, to what it was before. It will be two years, three years, sorry, in February, this February coming, I’ve been on it. The day that the lady that came out to give me the injections, she sat through, and went through how to do them, and what to expect next. 

 

At the time, I was very ill in bed. I could not move. I was, actually, being carried by my mum and dad around upstairs, through every joint being swollen. And I did this injection that night, two hours later.

 

I walked to the bathroom on my own. 

 

For the next couple of days after that, things started to go down, joints started to sort of recede, as it were, and I was doing the 25 milligrams twice a week, at that point. And from then on, things got much better. I’m currently taking the 50 milligrams once a week. As anybody else that has taken Enbrel (etanercept) will know, it makes you very sore where you inject and I find it easier just to do it once a week.

 

I now do it in my stomach, I alternate between my legs and stomach, because I find I get very sore and bruised on my legs if I do it there constantly. 

 

Things aren’t brilliant, but they’re nowhere near as bad as they were. I have far more mobility now. I can drive my car, which I couldn’t do before. I’m also holding down a part time job, at the moment.

 

And it’s amazing, when you’ve spent day in day out not being able to do anything, not being able to go anywhere, how it can affect your life. 

 

Yeah, it’s just, I’ve absolutely, miracle drug. It, it’s what they say it is I know that it is the drug that’s doing it. I haven’t actually fought this off myself at all. It originally it was juvenile arthritis. I should have grown out of it, late teenage years. 

 

And then in September of 2003, they had me in hospital to start me off on the Enbrel. I had twenty swollen joints at that time. So what they did is they started me off and I had like the first dose. And then I had a week of hydrotherapy and physio. And then I’d go home for the weekend. And they’d have me, they’d have me back for another week of the second dose. And then more hydrotherapy and physiotherapy. 

 

And within two weeks, the twenty swollen joints actually reduced to like three. Everything just stopped aching. Everything, it worked really, really well. 

 

I think I was on Enbrel for three years, until it started rejecting me. And the only reason it was rejecting, like my body was getting immune to it was because I kept getting tonsillitis. So I’d have tonsillitis, have my own penicillin course, it would go away. And then like two or three weeks later, I would get tonsillitis again. 

 

 

Yes it did very well for about two or three years. 

 

 

I was able to most things. I could walk without aids, obviously not long distance still because my hips were, my hips were stuck. So I’d still use wheelchair for long distance. But I could walk around the house. I could walk the stairs. 

 

Could I walk the stairs?...Yeah, I could walk the stairs. I could you know, walk from say the car into the cinema, into the actual cinema, back out again and things like that. I could probably walk from my house to the corner shop just down the road, which was you know, quite good. And when we went into town shopping I could get out of the wheelchair, into each shop that we went into and look around and walk around and stuff like that. So it was, it did work. 

 

 

Very, very well.

 

And then obviously it’s, my body started to, “hmm okay, we’re used to this one now, we’re going to stop. We’re going to reject it”. So they had Humira which they switched me to. I think I was on, I think it started to work at first, but it didn’t work as well as the Enbrel first did. So I was only on Humira, for about a year and half, two years. And then they recently switched me back to Enbrel in June of this year. 

 

Oh no July of this year because by the time, you know, they got everything sort it out. So in July, I went back into Enbrel. It kind of worked to start with. And I then I think that my body thought, well no you’ve had this before, we don’t want you to benefit from it. So it didn’t work. I had a bit of a break. 

 

Obviously, now like this I’m still taking it. It’s not doing as good a job as it did the first time around. But I think it’s taking the twinge away from the pain.