Sandra - Interview 63

Age at interview: 51

Age at diagnosis: 51

Brief Outline:

Sandra was diagnosed in April 2010 and her current rheumatoid arthritis treatment includes' Cimzia (certolizumab pegol), Methrotrexate, Sulfasalazine and Hydrochloroquine. Sandra's consultant talked to her about reducing and eventually phasing out the last two drugs. She also takes painkillers; Diclofenac and Co-Codamol and Amitriptyline at night time.

Background:

Sandra is a nurse and until her diagnosis worked full-time. Her initial treatment was not controlling her rheumatoid arthritis so she had to go part-time. She is divorced and has three children.Ethnic background' British- White.

More about me...

Eighteen months ago Sandra started to complain of knee pain and then she also noticed that her thumbs were getting very stiff and swollen. Her GP did a blood test and when the result came back send her to the hospital for further examinations. In addition to more blood tests, in the hospital they examined her joints and felt and checked the swellings and where she was getting the pain. All these procedures helped to confirm the diagnosis of rheumatoid arthritis (RA).

Initially, Sandra was given Methotrexate but unfortunately, it failed to control her RA. Sandra was experiencing regular flare ups and constant fatigue. So Hydroxychloroquine was added. This too failed to have any effect and symptoms became worse. Sandra was then started on Sulfasalazine and had to be signed of sick from work. A few weeks later she was admitted to hospital. When she was admitted into hospital shereceived a number of therapies to try and improved her symptoms' drainage of fluid and steroid injection to her knee and steroid injections to both hands, daily physiotherapy, occupational therapy and hydrotherapy. In hospital they added Hydroxychloroquine to her treatment and a few months later Sulfasalazine was also prescribed. She stayed on this combination treatment for quite a while but it was obvious from the blood results that the inflammation was not going down. In between, she was having regular steroid injections to help her cope with her pain and inflammation.

Sandra experienced a very bad flare up only a month after her last hospital stay. Her consultant then recommended for her to start on one of the anti-TNF treatments’ and suggested Cimzia. Her consultant did the DAS score (counting all the joints for swelling and for pain); took note of her lethargic state and the high level of inflammation shown in her last blood test. Sandra was found to qualify for anti-TNF therapy but she had to be reassessed by the specialist nurse six weeks later. Sandra had to wait for her second assessment without the help of a steroid injection because it would have distorted the second DAS score. 

The improvements Sandra has experienced since starting Cimzia have been gradual. For instance, her morning stiffness period is shorter and her knee has improved allowing her to walk without a limp and for longer. Her main problem is the lack of strength in her hands and wrists, she doesn’t dwell on the possible side effects of Cimzia because she said that her life after diagnosis was gloomy and therefore, she had no choice. Before Cimzia, she was scoring her level of pain as high as 8 to 9 but now she said it has reduced to 3 or 4. Cimzia was added to her combination treatment and Sandra’s consultant talked to her about reducing and eventually phasing out Methrotrexate and Hydrochloroquine.

On reflection Sandra recognises that RA has had a great impact on many aspects of her life. For instance, before her diagnosis she exercised everyday and hiked frequently alongside working full-time and managing a house on her own. Financially, Sandra now lives with a third of her original income and that she has had unexpected expenses such as buying an automatic car and many RA-friendly items for the kitchen.
 

Sandra was not responding to treatment and her symptoms were getting worse. She describes how her...

 

Each time I was given a new drug, I was told well this is really good, this is really good and we will get there but having then been on the three drugs for quite a while it was obvious by my blood results that the inflammation was just not going down. In between times I was having steroid injections and the only time I got any relief was for a week or two after the steroid injections but then each time I had a steroid injection, it seemed that the relief from the pain and some of the swelling was lasting a shorter and shorter time.

 

I was in hospital in the November. Yes and by the time I’d had a week in the hospital I was, and I’d had the steroid injections so I was feeling a lot better and that lasted about a month. And then it flared up probably worse than ever so I was then seen by the Consultant again in the December and he then suggested that I, the way forward was to start anti TNF’s. He assessed me and said that I met the criteria and then I had to wait about six weeks to see the specialist nurse to be re-assessed by her.

 

How did he assess you?

 

He did my DAS score which is when they obviously check all your joints for swelling and for pain so he counted that up. He listened to the way my life was and the lethargy side of things which was just extreme and he looked at my blood results as well which was still showing high levels of inflammation.

 

So those are the sort of points that meet the criteria?

 

Yes, yeah, you have to, I believe, be on a certain level with all those things so you do have to be quite bad to meet the criteria. And then it has to be, you have to be assessed again to make sure that, that perhaps just wasn’t a short flare up I presume and that you are still meeting the criteria when you are checked by the second person.

 

So that’s the specialist nurse?

 

Yes, yes

 

And she does something similar or?

 

Exactly the same. Yes she did exactly the same tests.

 

Do you have to fill in a questionnaire or?

 

Not really a questionnaire but part of it is they score regarding how much you can do at home and how you rate your daily life if you like. So that will include how well you’re coping with the pain and how much lethargy you get and you score yourself sort of nought to ten as to how you’re actually feeling with it or…

 

And how were you scoring at that time, do you remember?

 

I can’t remember which way round they do it, whether nought’s the worst or ten’s the worst but if ten was the worst, I was scoring about an eight.

 

And how were you feeling emotionally at that time, given that your life has changed?

 

Mm, desperate. Yeah, absolutely desperate. I felt that initially I was told you know, methotrexate would work for me and then I’d, well you’d added in another drug and another drug and nothing had. In the meantime I was getting very worried about my job; I was struggling to do things at home. In fact there was, well most things I couldn’t do at home, I couldn’t cook a meal, I couldn’t wash and dry my hair, I was struggling to drive, I was struggling with daily hygiene, life was just one big struggle and I was constantly feeling absolutely exhausted and it didn’t matter how much I rested or how much I slept, I didn’t ever feel refreshed and ever feel that I’d got some energy.

 

Sandra talks about how often she is seen on the anti-TNF clinic and describes the care she...

 

I think I started on the Cimzia and then was reviewed after about ten weeks by my Specialist Nurse to see how I was getting on with that. Because I’d been on the methotrexate, you have monthly blood tests anyway so that was no different, I carried on having my monthly blood test done and then when she reviewed me she again did the DAS score which is when they test your joints for swellings and pain and again looked at my blood results to see how; it was then showing that the inflammation was reducing.

 

After the first month or?

 

No I’d, it was about ten, I’d tried taking Cimzia for about ten weeks… that I saw her and then I think I was reviewed again about three, three months later. And then this time it’ll be six months before, six months gap between being seen.

 

I think, all the care I’ve been given has been excellent. My only frustration is getting follow up appointments.

 

Follow up?

 

Whereas you would see the specialist nurse or you’d see the Consultant and he’d say, “I want to review you in two months’ time,” and then you’d go out to make that appointment and it’s going to be three months’ time and to wait that extra month is a long time. So I think that has been my, my biggest frustration, is, is being told we will review you in two months or three months but then because of the appointments being so full, always adding another month on. But they are very good that there is the, the Helpline number which I have used so you know, if you are getting desperate you can phone up and, and speak to somebody and I do feel that I’m listened to. The hospital, when I was admitted I can’t fault it at all. It was absolutely fantastic. I think I needed to go in and it was also very, very useful for me in particular being with other people that had either rheumatoid or very similar conditions. It was quite nice to shuffle down the corridor with other people that were also working and walking at your pace rather than you constantly trying to keep up with people. And just experiences and tips of how to cope with doing different things, just, just your daily things – just getting yourself up and washed and dressed and doing your hair and invariably there was somebody that sort of said, “Oh I find it easier doing, doing it this way,” and that was really, really useful.

 

Sandra was advised by her anti-TNF team to avoid sunlight exposure and to seek medical help if...

They warn you about sunlight as well… and certainly I have found that if the sun is out at all, I’m not talking about going on, on holiday to a really hot place but just in this country, if the sun is out and there’s the slightest bit of warmth in the sun, it feels like my face is absolutely on fire so I usually wear total sunblock now and if I go out in the sun it’s for very, very short periods with total sunblock or I sit in the shade and I do need to keep covered.

 

You need to keep covered? Why? Is the skin more sensitive?

 

Yes it is, yes it is. I think methotrexate has the same effect as well that it can make you more photosensitive.

 

Any other counter indication?

 

Risk of infection. They do warn you that if you start showing any signs of infections, sore throats, fevers, coughs and things like that, you should be aware that actually potentially you could get unwell quite quickly. Therefore you should ‘err on the side of caution’ and get things checked out earlier on than perhaps you would normally.

 

But did they talk to you in terms of side effects or potential side effects?

 

They say you can be more at risk of skin cancers and they gave me a booklet to read of which there are loads of potentially quite worrying side effects. It, I do feel that the side effects that are listed, and there’s pages of them, could easily put you off taking the drug. But for me I felt I had no choice because my quality of life was so poor at that time to me it was worth those risks.

 

Sandra is on Cimzia and explains what she has to do when travelling abroad.

 

Any issue about being on this new treatment that I haven’t covered?

 

Travelling with it. Cimzia has to be kept in the fridge and obviously it’s a pre-filled syringe so if you want to travel abroad you do have to get a letter from your doctor saying that you’re carrying it. You have to carry it in a little cool bag and you have to make sure that when you get to wherever you’re travelling to there’s going to be a fridge where you can store it. Because it’s, you give it once a fortnight you have to work out what, where will you next injection fall regarding to your holiday if you’re, if you’re travelling so there are, there are, you do have to think about that. I’m fortunate that at the moment, I’ve only travelled to a friend’s villa so I know there’s a fridge there but of course if you were going to a hotel, you might need to have to think, “Well, will there be a fridge in your room or will there be somewhere in the hotel where you can store it?” So that could cause some problems. I’ve not had any problem getting through the airport with it at all, going through security.

 

Do you travel with a letter?

 

I travel with a letter from a GP yeah, so. It’s something else to think about and that’s why obviously if you’re going on holiday for a while, you’re bound to have to take one with you. If you’re going for a two week holiday it’s going to fall, sometime you’re going to have to give it. But by the fact it’s only every other week, if it’s easier then sometimes you can arrange these things for the week when you haven’t got to have an injection and that was my reason for doing it in the middle of the week when I thought I’m most likely to be at home than weekends when I might want to go and visit friends and things and if it fell on a weekend when you’ve got to have your injection, it’s just more hassle really to have to organise it and take it with you.

 

Sandra's employers have been supportive and agreed for her to return to work part-time but she...

Have you had any problems at work because of your rheumatoid?

Yes I have. They’ve been very good in one way in that they always let me have time, to take time off to go for appointments. I did, every so often, have to take time off sick just to completely recuperate at home and, you know, have a week off. I had, when it reached a real peak, I ended up in hospital for a week and during that time, that was the end of last year, I was off work for about six to eight weeks I think. My plan was just to take two weeks off and just try and completely relax and recover but in fact I got worse and worse and ended up in hospital. So since going back after my spell in hospital, I’ve been on part-time hours but it was very much hours that suited them, rather than suited me. They wanted me in for the mornings which actually for myself is the worse time. Mornings are getting better but to begin with my stiffness would last easily till 11 o’clock in the morning and I was expected to be at work at eight o’clock.
 

Sandra says that she has had lots of extra expenses following her diagnosis of RA.

My income has been reduced by a third. I’ve had to go and buy myself an automatic car because I was struggling so much driving so I, I had to find the money to go and buy and change my car which I wouldn’t otherwise have done  but I had to change for an automatic car.

I pay for a yearly prescription charge now so that’s cheaper but otherwise you, the other drugs that you get on your script from your GP, your Methotrexate and the other drugs, your painkillers, it’s all prescription charges otherwise I’ve… on bad days I would buy pre-prepared vegetables and things like that to help me which of course are always more expensive but when days were bad in the beginning, when I couldn’t peel, peel vegetables it was the only answer really. I pay for my supermarket shopping to be delivered to home because to go round the supermarket would just completely exhaust me. So there’s, there has, there’s been a lot of expense with it. It has been a lot of expense.
 

Because she feels much better since started on anti-TNF medication, Sandra tells others to try it...

Based on my experience I’m very glad that I was started on the anti-TNF’s because it has made, it hasn’t got me back to what I consider my normal self but it has made day to day life so much easier, so much easier. I think the important thing to remember with the anti-TNF’s is the, they’re not a cure and that there is no cure and one of the reasons for taking it is to prevent joint damage and when I was in hospital I saw some ladies that had such dreadfully deformed hands that I don’t know how they could manage to do anything for themselves with those hands. So you have to remind yourself that that is part of the treatment, it’s to prevent you getting that bad and to keep your joints working better for you as well as reducing the, the pain and the day to day struggles that you have. It’s a preventative thing as well as the treatment.

I think everybody’s very individual. I mean when I was first diagnosed I was told by a friend that her friend had got rheumatoid and she was started on Methotrexate and she was back to running three times a week so everybody is different and everybody responds differently and that was my hope in the beginning. So give it a go. If you’re offered it, I think if you’re offered it then you’re probably that bad that you should give it a go. I can only see, certainly for me that it was only going to make an improvement. And enjoy the relief while it lasts because that is what some people say is that with the anti-TNF’s they do wear off after a while but you can’t worry about things like that, you just have to take the relief it gives you for the time that it lasts for, if it does. And if it doesn’t work then there are others out there to try and I think you need to be honest with people that are assessing you as well. You know there’s no point putting on a brave face because they want to know what you’re really like as to whether these drugs and for helping their choice of drugs to help you. So you do have to be honest with them and let them know if you’re struggling. Let them know if you’re tired and let them know what day to day life is like for you.
 

Sandra finds the exchange of information and ‘little tips' though the chat room useful and...

 

I think when I was in hospital; the Occupational Therapist gave me the leaflet on the NRAS Society so that’s what sort of linked me to, to have a look on that actually.

 

And have you found the information you wanted and you needed?

 

Yes. I think, I think I had probably had a lot of the information there already but it’s just useful to listen to other people to know that you’re not going mad really, that you do feel this tired and you do struggle doing this activity and actually other people with rheumatoid do as well and it’s not you just being pathetic or weak.

 

To begin with I very much just went on and looked and read and didn’t join in but after a while then I started making comments and asking questions myself and it is good, it’s just good to share your experiences. It’s a bit like, as I said when I was in hospital, just picking up tips from other people as to how to cope with things. I can remember the one, the one lady telling me I was having trouble at that time even picking up a coffee cup, I couldn’t pick up a, a mug of coffee so she said all what she does is always wraps a serviette and supports the cup underneath with a serviette with her other hand and it was something so simple but it, it got me over the problem of not being able to lift up a cup. And on the website, its similar little tips like that, people saying, “Well I’ve tried doing this way or buy this gadget or I’ve found a really good gadget for doing this.”

 

Did you look for any information about this treatment [Cimzia]?

 

I did. I was given, given some leaflets from the Consultant on three of the different anti-TNF’s. I don’t know why but he said that he would probably choose Cimzia for me and I just went with his decision really. I did look it up online but to be honest, it only gave exactly the same information as to what I’d got in the leaflet that was given to me by the Consultant. There is the NRAS Society, Rheumatoid Arthritis Society and you can join that and go online and ask questions to other people that have got rheumatoid.

 

Have you?

 

I have. I didn’t initially but I have used it now. At the time I started Cimzia and nobody else was on it. Hopefully I’ve been able to give some useful input to other people that have gone online since saying that they are about to start on it. So I have always replied to them and told them my experiences of taking the drug.

 

So and what is their concerns, I mean do they talk to you about that?

 

Yes. I think anxiety is, I think probably it’s fair to say that most people’s anxieties are about the, the worrying potential side effects that they talk about. But I think that’s just a decision you have to make as to what is your life like now. Are you better off taking the risks which for me the answer was, was very clearly yes.