Emma – Interview 61

In 2008, aged 21 Emma was diagnosed with rheumatoid arthritis (RA). Currently, she is on a combination therapy that includes Sulfasalazine, Methotrexate and Naproxen as a painkiller and a new biological drug called Cimzia (certolizumab pegol). The plan is to eventually reduce her RA medication to Methotraxate and Cimzia only.

Emma was diagnosed with rheumatoid arthritis (RA) aged 21 and put on Salazopyrin (generic name; Sulfasalazine) and painkillers. She experienced very bad side effects from her RA treatment’ severe sickness and feelings of nausea, but she tried to cope without taking anti-sickness tablets. So, as she said; she grin-and-bear; the side -effects. Unfortunately, her treatment did not work and she was offered a combination therapy that included Sulfasalazine, Methotrexate, Hydroxychloroquine and Naproxen as a painkiller.

Emma stayed on the combination therapy for about a year and a half. She accepted her treatment and knew how to take the tablets properly. As a nurse, she understood the benefits of her treatment, but was also aware of its side -effects. Her main side effects were feeling of nausea, because of the Methotrexate, and she was more prone to colds and coughs due to a weaker immune system. But she knew that missing her treatment always resulted in pain and stiffness the next day.

The level of care she initially received in her local hospital was disappointing. To start with, she was put on the combination treatment and asked to go back in a year’s time plus there were no RA specialists. Her GP, worried about the poor level of care she was receiving referred her to a specialised rheumatoid hospital. At her first appointment Emma underwent lot of tests and the specialist consultant did the counting of inflamed and painful joints. It was established that her RA continued to be active despite the combination therapy. Until then, Emma had experienced pain on an daily basis but flare ups where less frequents. The RA specialist asked Emma to consider adding to her existing treatment, a new biological therapy; Cimzia (certozilumab pegol). At that time, Cimzia had not yet been licensed for the lower body joints and was in clinical trials for upper body joints. Emma’s RA mainly affected her feet and toes and sometimes her knees. Her consultant wrote to the manufacturers explaining her situation, emphasising her age and they agreed for her to use Cimzia. The next step was for her consultant to write (several times) to the PCT until finally, they agreed to fund the new therapy for her.

Emma was given lots of information about Cimzia, and asked to consider its shortcomings before agreeing to using it, in particular, the potential effect on her fertility. Moreover, given its newest in the market, little is known about the long term effect of Cimzia. Emma decided to give it a go in the hope of improving her pain level and her overall quality of life. The thought of not knowing what may happen in the future, however, was described by Emma as quite daunting; but her attitude is not to worry now about what may happen in the future.

Emma has developed a heart condition, Sinus Ventricular Tachycardia (SVT), which is an irregular heart rhythm, that resulted from using Cimzia. She is having a procedure to correct the SVT and she will continue using Cimzia. The biological therapy is working very well for Emma and is enabling her to go about her daily activities most of the time pain-free and with almost no flare ups.

Her RA resulted in her no longer being able to run or walk quickly but recently she participated in a sponsored Walk for life; event. Something she would not have imagined before Cimzia.
Emma admits that RA has impacted an awful lot in her life but she has a very supportive partner and family and their understanding and emotional help have helped her cope better with her condition.

Emma finds the internet useful and accessible but the most important thing was to know that she…

Age at interview 24

Gender Female

Age at diagnosis 21

The Internet is quite good for me because it’s just easily accessible.

Do you go to particular websites or just go on?

Yeah I tended to use one in my first couple of years of diagnosis certainly for advice and for things like that and that was NRAS which is the National Rheumatoid Society website and I found that very helpful.

So you emailed them or?

There’s just a, it’s just a website that was given to me and there’s quite a few young people on it as well. And I think that was more important knowing I wasn’t the only young person with rheumatoid. And there’s discussion groups and things like that. I’ve not used them. I’ve just literally gone on to find information that I’ve queried about or anything like that.

And this is called NRAS (National Rheumatoid Arthritis Society).

Yeah NRAS.com I think.

I’ve read about them obviously like when I go for my appointments and things there’s loads of leaflets and support available but I’ve just. I felt I’ve not needed it because I’ve got the hospital, you know, like the specialist nurse on the end of the phone and Internet. And I just feel that’s enough to get me through and if I’ve got a query I know I can ring somebody and get an answer.

And do you remember what you asked at that time when you got into these sites? What were your concerns or worries?

I think it was that people can feel better. You know, you can feel well and you can feel less pain eventually. They just have to tailor it to suit you. So I think at the time when you’re in so much pain and it’s a daily basis and it’s a daily struggle you almost have to read it to believe it because you don’t feel that you’re going to get any better at that point in time. And I think knowing that people have been there, they’ve been through that pain and they’ve got better or they are improving and there’s always something out there. I think that really helped me quite a lot actually.

So you mean to have hope?

Yeah. And to read other people have got it as well. You’re not the only person struggling with it. You know, there are other people talking about their family because I always worry about my partner. You know like if we’re out I’m always the slow one and he always walks with me and silly little things that I don’t want to stop him doing just because I’m slow or I can’t do it or any. Even though he is so supportive it doesn’t bother him at all I always think about him. And there are people on those websites talking about their families, about their partners and things and I just find that reassuring.

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Emma works in the same hospital but in a less demanding ward. Previously, she worked in the A&E…

Age at interview 24

Gender Female

Age at diagnosis 21

Now what I would like is. What were the effects on your work life? I mean you were training when you were diagnosed?

I was in my final year of university training to be a nurse and I was working on a ward when I was diagnosed. They were extremely supportive of everything. Just absolutely brilliant in understanding how I felt and giving me time and if I needed to stop, slow down the opportunity was there. I had the full support of my work colleagues. It was brilliant.

Since qualifying I worked in a faster-paced A&E which after a. I think I was there for 8 months and I found it far too much. I was on my feet the whole time and just doing simple things that are required in that environment I couldn’t do because it started to affect my wrists, my ankles, my toes even more. So I thought, I have to stop what I am doing and go to a slower-paced job. And I ended up working back on the ward where I was a student when I was diagnosed.

So that is more manageable?

Yes. it’s not as fast-paced. it’s still demanding. it’s still long shifts, 12-hour shifts but in a way they are slightly easier because you have days off in between to rest, to recuperate. But if I go into work and I’m not right or there’s a, you know, I have tendonitis or something they are very supportive, very understanding. don’t really need to give an explanation. They just understand and give me the time I need to recuperate and recover.

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Emma finds it too painful to inject herself so a colleague at the hospital does the Cimzia…

Age at interview 24

Gender Female

Age at diagnosis 21

Yeah it comes in an injection form. When I first started on it [Cimzia] I had to have two injections at the same time every two weeks. So it was like a, to get my dosage up to the right level. Once I’d had three months worth of that then I went on to one injection every two weeks. I personally can’t do it myself [laugh]. I take it into work and my colleagues do it for me. I find it’s quite a difficult thing to do because it’s quite a thick solution. And I just, I can’t brace myself to do it myself [laugh].

You use a pen don’t you?

it’s quite a large sort of needle.

Ok so it’s not a pen?

Syringe. So it’s not like a pen one. it’s quite a large one with a syringe and a sort of pusher on it, plunger on it. it’s very well adapted for people with rheumatoid in their hands actually, very easily, you know, removable handles and things like that.

And it is under the skin? it’s subcutaneous. Is it painful when the liquid is going in?

Yes.

So maybe that is a put off?

Slightly but I mean it’s once every two weeks. There seems to be a lot of solution and it’s quite thick so I find it’s the burning pain rather than anything. It doesn’t last for very long. it’s only when you are having it done. Because it’s quite thick it’s difficult to get in and sort of have to grin and bear it whilst you have it but it’s done within a matter of seconds.

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Emma and her partner would like children in the future. At present, they are very careful to…

Age at interview 24

Gender Female

Age at diagnosis 21

I’ve asked that a couple of times and a few people have said to wait until nearer the time and we’ll go through it in detail. But someone has explained to me I would have to come off all of my medication for about 6 to 9 months before I think about trying to get pregnant. And I think that would be the hardest time because if I do manage to get pregnant I’d be, I’ve heard that lots of people from professionals and non professionals that hormones from pregnancy actually alleviate some of the symptoms from rheumatoid so it would obviously just be the period when I’m coming off my medication. But there are alternative things that they can give me that are safe while I am trying to get pregnant that I could use instead. But as I’ve said, I don’t know in great detail but I know there are options and it is possible and I’ve heard a few stories where there have been successes.

And they’ve also told me if I do get caught pregnant whilst I’m still on my medication there’s a high risk of the pregnancy failing or having a severely disabled child because of the Methotrexate. I’m fully aware of that which I think was good of them to tell me so soon.

And what form of contraceptive are you using?

I use Microgyn on myself and we use condoms as well.

I think we’ve talked about your worries regarding pregnancy?

Yeah. That still gets me worried. [Ha ha] it’s always on my mind. it’s a huge worry.

And what have your consultant and specialist nurse said about it?

Just explained, you know, there have been good cases. People have been able to get pregnant whilst on this medication and, you know, there’s ways around it. You might find it slightly difficult but it’s possible. And I think, I mean I know I want children further down the line. I know that so it’s. I just don’t know how difficult it’s going to be. And I think not knowing is worse. I’d rather just know it would be difficult. Know it’s possible. Know I can do it.

And as I say it can be quite upsetting in case it doesn’t work out but I mean there’s no point thinking like that. You have to think positive. You have to think, it’s not yet. We’ll cross that bridge when we get there. There are ways around it. I have been told that and they will help me through it. I think that’s a big thing as well. I know I will be monitored closely and I know I will be given advice and things like that.

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Emma has developed an irregular heart rhythm; a listed side-effect of using Cimzia. She is having…

Age at interview 24

Gender Female

Age at diagnosis 21

Personally yes. I’ve actually developed SVT which is sinus ventricular tachycardia which is an irregular heart rhythm from it. it’s not definite because some people are born with a pre-disposition to it but I’ve, I’ve had two attacks of SVT since I started on the injection. So I’ve been to see cardiologists and I’m having a procedure to stop that up in [city].

Will you continue with Cimzia?

Yup. I will continue with it. This is why I am having a procedure on my heart because the injections are working so well I really want to continue them. Obviously I don’t like having the irregular heart rhythm and it’s quite a horrible feeling. You never know when it’s going to happen which is why I am having the procedure on my heart to stop it happening again ever.

Do you have any concerns in the long term or do you just sort of balance the benefits and?

I think not knowing what the long term side effects of Cimzia is, kind of frustrates me in a way. I’d rather just know what and deal with them but I can’t look at that because I have to look at what benefits I’ve received on it so far and just be thankful that it’s worked for me. So whatever is down the line I’ll have to deal with when it comes really.

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Emma’s treatment wasn’t working and her consultant suggested an anti-TNF drug; Cimzia. Emma…

Age at interview 24

Gender Female

Age at diagnosis 21

What was the name of the medication you were put on?

It was Salazopyrin (generic name’ Sulfasalazine), single agent with some painkillers on the side.

Ok and how do you take those?

It was on increments. So I would take a certain dose for one or two weeks and then increase that dose and so on until I was at the level he needed me to be on. Side effects’ really bad sickness, nauseated the whole time that I was on it. Lost quite a lot of weight. And because of my age and being a girl there’s implications for taking anti-sickness tablets so I was told by my GP. So it was kind of a grin-and-bear it sort of medication and I was still suffering the pain with that. And so when I went back to see a specialist nurse locally at the NHS hospital they introduced methotrexate and Hydroxychloroquine as a treatment dose – a combination therapy.

So you were on three at that point?

I started on Salazopyrin. When that didn’t work I went onto Hydroxychloroquine, Salazopyrin and Methotrexate with Naproxen on the side as a painkiller.

For how long were you on this second medication?

[sigh] About a year and a half.

And how did you feel during that time?

Again nauseated because of the methotrexate. Quite a few coughs and colds over the time because obviously I’m slightly immune-suppressed. And it’s a lot of tablets to be taking at my age and it’s a lot. You know, it’s all the time. If you forget you certainly know about it. Your joints are painful the following day.

The, the pain was on a regular basis. It was every day. Flare ups were not very often but considering the level of the pain I had every day it was, it was. I never had a good day if that makes any sense at all. Obviously some days were worse. Some days were slightly better but it was quite a high pain I felt every day especially on waking up. That was the worst.

And you were taking painkillers every day?

Yup.

So how did they explain Cimzia to you?

I went for my first ever appointment and I had X-rays, ultrasounds, examinations on my first appointment there. Considering how long I’d been on the combination therapy including methotrexate the ball was sort of put into motion. I was explained it was a very new drug. Not many people had been offered it and it might prove slightly difficult for me to get it because it was in the trial, only trialed on sort of upper body joints and it wasn’t licensed for toes or feet at the time. So my consultant wrote a letter to the company explaining my situation, explaining my age and how I’d been on, you know, I’d given it a fair run with the combination therapy and nothing had seemed to work at present. And there was a bit of, it took quite a long time. They first came back and said, no, they weren’t happy. So he wrote again and again and again and eventually they, they authorised it and my local primary care trust (PCT) were happy to fund it. So I think that was the main problem because as it was I wasn’t in that local PCT so it was my PCT that had to fund the whole process of it. So
There was a specialist nurse who dealt with Cimzia especially and she had a massive welcome pack to it. And it had the drug introduction, how it was used, had what I could expect from it. I mean the side effects from it were pages and pages of it. So she did go through it with me very accurately. I mean the

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Emma talks about the benefits she has experienced since using Cimzia and describes the…

Age at interview 24

Gender Female

Age at diagnosis 21

I first started it with an open mind but obviously I had to take the two injections for 3 months and they said there might be improvement within sort of between 3 to 6 months but I’d have to wait that long to see the benefit from it. And I think because it is quite a slow process of it working you don’t realise just how much better you are until quite far down the line. When you realise I can get up in the morning and I’m not as stiff as I used to be. I can actually wear high heeled shoes for a limited amount of time. I can. I have joined a gym.

it’s just little things that you can do on a regular basis that you weren’t able to do before. So it’s not like one day you wake up and everything is perfect and you’re all back to normal. It is how you manage to start doing things again that you weren’t able to do before.

Ok so it’s a very gradual and slow process.

it’s a very gradual process.

So there just comes a point where you start, you realise that you can do all these things that you were not doing before?

[Uh huh] I think it’s good to mark your achievements as well. I mean this summer just gone I walked a Race for Life and for me doing that considering what I was like last year is amazing. I wouldn’t have been able to do it last year. That’s how bad my feet were. Obviously I’ve had lots of like little injections along the way of steroids and things to alleviate flare ups but considering where I am at the moment to where I was this time last year it’s a huge improvement.

So how long was that walk that you did?

I think it was 5 kilometers.

Five kilometres?

I think it was about, yeah three miles, five km I think.

Tell me how you were last year because I mean you said that you had sort of pain, you were unable to walk. In comparison how far were you able to walk?

The best way to compare it is if I am at work. Last year doing a 12-hour shift I would come home and my ankles would be swollen, my toes would be swollen. They were painful. I had to come home, lift my feet. My partner, bless him, used to rub my feet for me. I used to use a lot of sort of cooling or heat alternatives to try and ease the pain. And that was after work this time last year. Whereas now if I finish a 12-hour shift they may be slightly swollen but that’s probably because of how long I spend on my feet but the pain. I wouldn’t say there’s a pain. I’d say it was more of a dull ache that I know I’ve been on my feet but it’s manageable and I could come home from a 12-hour shift and go out. I could, I can do other things. I don’t have to come home and sit and put my feet up. I know I can carry on for a little bit longer.

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