Melissa

Age at interview: 22

Age at diagnosis: 5

Brief Outline: Melissa was first diagnosed with juvenile idiopathic arthritis and later with rheumatoid arthritis. She was on methotrexate for about eight years. She has been on two Anti TNF treatments: etanercept (Enbrel) and adalimumab (Humira) and expects to be started on influximab soon.

Background: Melissa lives with her parents and would like to do a writing course. She uses the Internet a lot emailing and talking to her friends abroad. Ethnic background/nationality: White British.

More about me...

Melissa lives at home with her Mum and Dad and was first diagnosed with juvenile idiopathic arthritis (JIA) when she was five years of age. In her late teens she was also diagnosed with rheumatoid arthritis (RA). There is no history of any type of arthritis in her family.

 

Melissa was on methotrexate from the age of 8 to 12. It worked well but she experienced a lot of sickness. In 2003 her medication was changed to an anti-TNF treatment' etanercept (Enbrel). In her experience Enbrel worked really well for about three years but then it became less efficient. Her medication was changed to another anti-TNF treatment' Humira (adalimumab). Melissa says that it worked at first, but it didn’t work as well as the Enbrel did. She was on Humira for about two years. Doctors have recently switched her back to Enbrel while they wait for PCT approval for a new Anti-TNF treatment' infliximab. Melissa knows that this new drug is given intravenously and that she will need to go to hospital to have it done. Her consultant explained that after having her first infliximab infusion she would need to come back to hospital two weeks later to have the second dose. She was also told that they can usually tell if infliximab works after two doses. She said, ‘Everybody seems to get a reaction after two doses’. 

 

Melissa has accumulated a great deal of information and knowledge about her condition. She usually asks her consultant to supplement information with written material and she does a lot of research using the internet. She does not have a favourite site. She has done a lot of research on anti TNF treatments and she is aware that infliximab is the last anti-TNF medication that she can get on the NHS.

 

Melissa thinks that having a positive attitude helps her cope best. She admits that sometimes she gets frustrated and feels down but her mother and father are good at cheering her up. Both her parents are an important source of emotional support. Her mother is her full time carer. 

 

Melissa has a great deal of experience in dealing with doctors and hospitals and her advice to them is that they need to listen to their patients. She describes herself as an expert of her condition because she is the one who knows what it is like to live with rheumatoid arthritis on an everyday basis.

 

Melissa took Enbrel (etanercept) for three years. At first Melissa was able to get out of her...

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. 

 

OK. When you say that it worked very well for about three years?

 

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

 

Tell me about that period, what were you able to do?

 

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. 

 

OK. 

 

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.