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Linda - Interview 60

Age at interview: 44
Brief Outline: Linda was diagnosed with rheumatoid arthritis (RA) in April 2010 and she is currently taking part in a clinical trial for Golimumab. This therapy, has significantly improved Linda's quality of life. She no longer has flares ups that had previously affected her working life. She is awaiting a decision from her PCT as to whether they will pay for her to continue having this treatment.
Background: Linda is divorced and has a 19 years old daughter who is in her first year at university. Linda is a civil servant and works full-time. Ethnic background' British.

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Linda was diagnosed with rheumatology arthritis in April 2010. Previously, she had experienced pain in her hands, feeling tired and finding it difficult to do things that before she took for granted like opening jars, changing the gears in her car, and so forth. A blood test showed the rheumatoid factor antibody in her blood. Her GP referred her to the rheumatology clinic promptly.

At the rheumatology clinic she was tried on various pharmacological therapies (Sulfasalazine, Hydroxychloroquine and Methotrexate) to help control her condition but unfortunately, Linda continued having regular flare ups. She was taking the maximum dosage of Methotrexate. A year after diagnosis and despite trying different treatments, the joint count of her swollen and tender joints indicated that her RA continued to be severe. She was invited to take part in a clinical trial of a new biological drug' Golimumab. Linda eagerly accepted as she was ready to try anything that would help improve her condition. In preparation for her new medication she had an appointment with the specialist nurse, who went through everything with her and provided all the information she needed.

The Golimumab treatment has significantly improved Linda’s quality of life. She no longer has the unexpected flare ups and tiredness that she previously experienced. She also continues taking Methotrexate but in a smaller dosage.

At the time of the interview Linda had one more injection of Golimumab to take but it is uncertain whether she will be able to continue with this treatment. Her consultant wrote to the PCT (Primary Care Trust) to find out if they would continue financing Golimumab for her.

One of the positive impacts of Golimumab has been on Linda’s ability to fulfill her work commitments without the anxiety of having unexpected flare ups and consequently, taking time off work. The organisation where Linda works is undergoing restructuring, and Linda knows that without the Golimumab her condition will revert to what it was or get worse, and she is worried that a deterioration of her rheumatoid arthritis may put her at risk of redundancy. Linda is divorced and hers and her daughter’s financial security depend on her.
 

 

Linda talks about how she felt before she started on Simponi and how successful it has been in...

Linda talks about how she felt before she started on Simponi and how successful it has been in...

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I’d say it was about 12 months, just under 12 months I’d say on the treatment. And then, you know, just a review they can’t give me, at the time they couldn’t give me any more methotrexate. I was on the maximum I could be given. So it was to, you know, to be, I think it was. The trial was coming or something. I don’t really know. It was just, ‘Would you consider that?’ You know if…
 
They offered?
 
If you were suitable. Yeah they just said, ‘We’ll put your name forward’ or, you know. And then I got, somebody got in touch with me.
 
So it was just basically because they couldn’t give you any more of the methotrexate?
 
I think it was just because there weren’t, it wasn’t settling when, you know the, it didn’t seem to be settling, I mean something to do with my blood I’d understand, my white blood cells or whatever it was that wasn’t. It was still active.
 
Obviously you’re still, I still get odd days of I know if I’ve done too much lifting because we do, you know, in my job there’s a lot of paperwork and we deal with files and so they can be quite thick. I do tend not to do any lifting if I can avoid it but just simple use of a computer sometimes the mouse, if I’ve done too much then it will hurt. You know it will start paining me but that’s. You know that’s normal but I’d say a 100% better with using the golimumab I’ve got more flexibility. I quite, before I was on that I was really, it was tight. My joint was really tight. Well I can bend.
 
Ok so it’s more flexibility
 
Yes and I think that like because of the swelling, the swelling’s gone right the way down. So I…
 
It’s ok so there’s more flexibility and no inflammation.
 
Yes. Yeah but it’s the inflammation and the flexibility that I’m most pleased with.
 
And what about your feet?
 
My feet are ok. See I tend not to wear a tight shoe anyway. I’ve got. See, see the marks on [showing foot] my foot but that swelling has gone down on my feet as well so, around the toes but I don’t get as much pain. Sometimes when I used to be walking for, walk too far then, you know, feet tend to ache. And getting up in the morning I do stuff like, it’s a bit stiff until you get mobile and walk but I’m fine. I’m not as stiff in the morning.
 
So for how long have you been on the golimumab treatment?
 
I think, well I can’t remember. It must be I think about April. I think it’s about April/May I might be wrong but I’d say…
 
So about six, five/six months?
 
Yeah, yeah.
 
And for how long will you be on it? Do you know?
 
I think, well I know I’ve got one more injection in the fridge and I spoke to the hospital yesterday and they were hoping that I would probably get another one for November but after that they have written to the, is it the PCT to ask but I think it’s to do with budgets that I might not be able to carry on with it because it has something to do with the scoring of. You know it, I think if you’re a thousand, marked the way they work it but if the more joints which are in agony, you know, that you’re affected by then you’re more likely to stay on it. Well the fact that it’s done me good it doesn’t s
 

Linda encourages other patients to volunteer to take part in clinical trials.

Linda encourages other patients to volunteer to take part in clinical trials.

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People are scared by drugs trials or these new drugs on yet nobody knows. It’s not tried and tested, you know, trialed, but it’s only guinea pigs. If you don’t put yourself forward to have a go then how are you going to get results or how are you going to know if it does work.
 
And I just think when you’re in a situation where you are confronted with pain you will try anything if it means you will, it gets some relief. And I just think, ‘Don’t be scared to have a go because the positives outweigh the negatives’.

 

 

Linda's RA has responded very well to Simponi, but she is unsure whether her PCT will provide the...

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Linda's RA has responded very well to Simponi, but she is unsure whether her PCT will provide the...

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And do you have any concerns if they take you off the drug?
 
Yeah
 
What are your concerns?
 
Because I know it sounds crazy and you think the weather doesn’t affect but the bad weather is coming on now to December, January, February. That’s the worst months for flare ups and pain because they tend to be worse in the winter than they do in the summer. And it worries me that I’d say by January by the time the drug has left your body that are my attacks are going to be more severe because, you know, taking it off me or, you know, what will happen basically. I’ll go back to the way I was which I don’t want to go back because, you know, I don’t have to take time off work or, you know.
 
Were you taking time off work before?
 
It was more they had to work around me. I’m not making, I’m not getting allowances made for my day-to-day duties where, you know, say I was having a flare up first thing in the morning then I’d be running late. So I was working around the days I could do things. I did go to work but it was taking longer to get into work or I’d have shorter days because, you know, my wrists were really sore so I didn’t want to do too much. So it was, although I wasn’t taking actual time off it was working within the limits with what I could do whereas now I’m not making any adjustments to my days really.
 
And how are your employers and?
 
Well they are fine. But as I say I’m not really bothering them if you know what I mean because I’m actually. I call in myself that it’s remission. It’s temporarily slowing it down, that’s the way I feel it’s slowed down so I feel like, you know, it’s just on an even keel at the moment. I’m not expecting flare ups or, you know, whereas you think, ‘Well I haven’t had one for a while I’m due to, you know, it’ll kick off soon.’ I’m not getting any warning signals that it’s going to, you know, start getting the pains or the tingling, you know, in my wrists and it’s just I feel it’s settled. So I am worried that, you know, you saying about ‘concerns’ I am concerned that once the drug stops that it’s going to be unsettled again and I’ll have more flare ups. Which, you know, I don’t know, I can’t do anything about that but that is worrying me.
 
What have they said?
 
The hospital?
 
The hospital said about an alternative?
 
Well they haven’t because obviously I’m, it’s coming to, because the trial is coming to an end I will, I think by November I’ll be, I think next time I go in November they’ll know which, you know, and where I’m going to. Obviously I’ve got to go back to the clinic then and so obviously it will be another doctor I will see and they’ll take it from there as to what the next step is supposed to be once I’ve been taken off the trial. So I don’t know until I see them in about November.
 
So they haven’t explained or told you about it?
 
No not really. They just said, that they’d wrote off because I’ve done so well on it is there any way I could be kept. You know, because of the benefits, you know, it’s improved. For me it’s improved… you know it really has improved my quality of life because I’m not relying on anyone to do anything for me. I can get on with my own, you k
 

Linda has responded so well to anti-TNF therapy and talks about the difficulties she experienced...

Linda has responded so well to anti-TNF therapy and talks about the difficulties she experienced...

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And so at work you haven’t had any problems?
 
No I’m ok. As I say for this last six months whenever, how long I’ve been on, since April I haven’t made any adjustment in work at all. So I’m quite happy [laugh]. It’s just better for me because, you know, everyone worries about their jobs in this current climate and, you know, the fact that I’m not taking time off work has got to be a bonus.
 
So that is at the back of your mind the possibility because of the current climate that if you start taking time off because you are sick that might prejudice your job?
 
Go against me, yeah.
 
Yeah I understand. So you main worry is, you main concern is what will happen if they take you off the golimumab?
 
Yeah whether I will start getting more flare ups more regularly due to the weather. It’s going to be going into winter which is, I’m prone to get, you know, more attacks in the winter because the cold weather sets them off.
 
And you know it’s just going back to again relying on somebody to open milk for me or bottle tops, car door, you know, my car door. It’s all simple things even changing the gears on the car. You know it sounds something straightforward but sometimes if I have flare ups it lasts for a few days so it makes it difficult. Then it’s difficult getting to and from work. I’d have to go get the train, you know, which is a lot, takes longer to get into work than what it is. You know, I can go. If I’m not feeling great I can come home in the car but if you’re having to rely on public transport it’s longer for me to get home.
 
So if I have to summarise I would say that your main concern now is…?
 
What happens next?
 
What happens next?
 
Am I going to go backwards?
 
Exactly.
 
It’s just. I’ve come so far or I feel so much because even everyone says to me, ‘Oh, you know, you’re just so much better with that’. You know, people in work and that’s because I used to be sitting there and holding my wrists all the time because of the pains. You just get on with it but I don’t have to worry about getting on with my job, getting on with my day because I don’t, it’s not, you know it’s not present all the time. I can forget about it. You know, sometimes you forget you’ve got it [laugh]. Then, you know, you’ll get an odd twinge and you go, ‘Yeah maybe I shouldn’t be doing that’.
 
But because I’ve been so well on it just worries me that, ‘Am I going to go two steps back or is it going to go worse than it was before’. If you know what I mean, it’s like a, because you’re taken off it will it aggravate things, speed up even faster. I don’t know. It’s just things you worry about.
 
And one of the concerns is the job situation?
 
Yes.
 
Ok.
 
Yes, yeah because in this climate it’s happening in our. I am part of corporate services which my bosses are down in [city name] and they are already having a big restructure of everyone’s jobs so nobody. I know we’re in the North but it’s again everybody is  under. You know, nobody [everyone] is under scrutiny, you know, scrutiny and it can be anyone next time. It could be North or them.
 
Obviously
 

Linda uses the internet mostly to find about complementary products but the leaflets provided by...

Linda uses the internet mostly to find about complementary products but the leaflets provided by...

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Have you looked on the Internet for information about?
 
Yeah I’ve had a look [laugh]. But there’s all sorts. To be honest I think if you had every single supplement, every single, you know, take cod liver oil for this, take Omega fish oils for that you’d be rattling and you’d be taking that much that nothing will be working so it’s being sensible about it.
 
You know, I do read it but I don’t necessarily go ‘Oh that’s a new thing for rheumatoid arthritis I’ll have that. I’ve got to try it.’ Because I do think that, you know, if they were that marvelous there wouldn’t be any need for medication would there? You know some people it will help and others it won’t so I tend to not read too much into it. It’s just like having a base, you know, a general commonsense approach to, you know, fruit and vegetables and healthy eating than needing all supplements and things.
 
But when you go onto the Internet do you Google things or you go to specific sites?
 
Well yeah it was, it’s something, it depends. If somebody tells me about something like somebody told me rosehip, some kind of rosehip oil or some kind of supplement with rosehip oil in and something that is supposed to be very good or was it cherries? Somebody said cherries and things like that. So, you know, I tend to have a look but I won’t follow it up and go, ‘Oh I must buy that’. You know I’m not that way inclined.
 
Which type of sites did you visit?
 
Just it was, it was just Google. I just Googled. Was it iron deficiency? I’ll just click them up or, you know, go through a couple of things.
 
Ok.
 
You know, like not at a particular site. It’s just there.
 
So no medical sites or?
 
Not really, no it’s just…
 
NHS or?
 
No not really.
 
Or charities?
 
No.
 
So have you been in touch or have you heard about sort of Arthritis Research UK, Arthritis Care?
 
I’ve heard of them because are they the ones that do the leaflets for the hospital? Yeah as I say I’ve got handfuls of their leaflets upstairs. I always when I go to the hospital I always see if there are new leaflets there. I will pick them up. The one about mobility, you know, one’s about exercise and eating. There’s, I’ve got them all. If there’s anything new I tend to find at the hospital it’s pretty good.

 

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