Interview 31

Age at interview: 37

Age at diagnosis: 27

Brief Outline:

Diagnosed '93 after quick onset. Side-effects from various DMARDs. Currently on Enbrel (anti TNFa) twice a week, Brufen retard 2400mg/day, Prednisolone 7.5mg/day and Paracetemol as required. Both elbows replaced (2002) and knee washout operation.

Background:

Housewife (previously secretary), married with 3 children (one born since RA diagnosis) and 2 step children.

Has often been asked about her family history and would like to know, from a trusted source,...

There is one thing that I've never ever really been told by a consultant which I should find out, is I, it's something I've not wanted to find ask because when I first had this they asked me if any of my family had it and I assumed from that this is hereditary. I bumped into a gentleman a couple of months ago who used to do research and actually worked on some of the treatments that was the second line treatments, but has now retired and he answered it for me and said it is not a hereditary thing. It is not something that I will pass down to my children because I have a fear of passing it to my children but I still would like that answered by someone who's in there now. That's still in that research side to find out really if that is true. That's another one, another question I would like answered.

And have you tried looking up on the web?

No, I think it's one of those, one of those things that that's the one I'm avoiding because I do not want to be told that my kids could get it. I want to know, but I want to be told by someone who is really, knows what they are talking about. Not that I am going to read it and it that it's going to be wrong. But the fact that I want it to be from a, you know, someone who really knows what they are talking about. Because I want that one answer and only want it answered once. It's a bit scary. 

She was wrong to keep it a secret from friends and family for fear of being treated differently.

I think I kept it quiet from the rest of my family for a little while. I had to come to terms with it, I think, myself. And then once I'd realised, you know, that they, they weren't going to look at me any differently, they were going to just help me as much as they could then I told the whole family and all of my friends. I felt that my friends would treat me differently, that they would, you know, don't, sort of do too much with her, she can't do it, and things like that. But I've been very lucky, I've got very, very good friends and they walk at my pace and if I want to walk faster they walk faster with me and things like that. They just know to do as I do and not try and, push me too much. And they are just very, very good friends that I've got.

Depo-Medrone injections made her feel better but the effects lasted shorter times the more...

I had the Depo-Medrones. Yeah.

So they were into joints?

I've had into joints but I used to just have them in the bottom that did the whole, the whole body.

Right.  OK and how long did the effect of those last?

At the end about ten days, they were only lasting me about ten days but they don't like you to have them, too many in a small space of time which is what I was doing.

You say in the end that they had previously worked for longer?

Yeah they were working for sort of two to three weeks but they just, they were literally, I'd have the injection and within ten days it wasn't as if I'd had it done so they weren't lasting very long on me at all.

And when you say they worked, what effect do they have?

When you had the Depo-Med, Depo-Medrone injection the next morning you knew that you could get up and you could do, I would do all my housework. You know, I'd try to do it all because I think you know as the days go on it gets less, the effect gets less and less but the first sort of two, three, four sometimes days are just brilliant. You just think 'I can be normal again' [laughs], well as normal as you can but you know for you, for when you are feeling really bad and they do give you that injection, that's a lovely feeling those first few days because everything is so much easier. And it just slowly wears off.

Her husband helps her by injecting the Enbrel twice a week.

But these injections are working wonderfully and my husband's having great fun doing them for me [laughs].

Right, so, he, how often do you have to have them?

Twice a week, in the tops of the legs and it's, it's really good, you get a complete pack with everything in it that you have to do, but the unfortunate thing is I can't crack the tops off the needles, I can't take the tops off the little bottle that you have to use the syringe to put the stuff in so, it was agreed that [husband] could do it for me. So he makes this up for me on a Monday and a Thursday and then injects me with it and he's loving it [laughter]. He can inflict some pain on me.

Felt the effects of Enbrel straight away and has less inflammation and more strength.

The treatment that I am on is supposed to make me feel loads better. I had my first injection nearly four weeks ago of the anti-TNF and by the following morning I could actually get my wedding ring back on which I hadn't been able to do for so long because my fingers were so big. I actually saw my consultant yesterday and I said to him 'I've never known to have wrist bones.

I can actually feel the bones back in my wrists again where the inflammation is just going down so quickly'. And he's seen such a difference in me in four weeks that I'm thinking another four weeks on 'This could be great!' I just want it to work so badly [laugh]. So I'm looking forward rather than backwards. I'm hoping that it's just going to get better. I hope.

I was told that it's, they call it, like, the miracle drug and as much as I wanted to think 'Yes, next week, I'm going to be walking further than I've walked for years', but I also, although my fingers went down the next morning and people were saying 'How do you feel? How do you feel? Do you feel really good?', I was like 'Oh, I feel alright, I feel the same' because I could feel the difference but I had this thing that if I admitted I felt the difference, I would jinx it, it would go wrong. Something would go wrong somewhere.

So although I'm feeling, I am feeling a lot better and so much stronger, I, I frightened myself the other day when I picked [son] up from the floor. I have never done that since he was born. I've always had to have him at arm's, like at hand level, and I actually lifted him from the floor. He fell and hurt himself and I lifted him up and before I realised what I had done I had actually lifted him up. And he weighs a ton and I was amazed [laugh]. Yeah, shocked, cos that's, it's given me a strength that I didn't have, I haven't had for such a long time.

Recovered well with physio after two elbow replacements and is very happy with the movement she...

I had the first one done and then I had the second one done three months' later. When I had the second one done my first one, they were amazed with my first one, at how good it was. The scar was brilliant, the movement was excellent. I could touch my shoulder and, and straighten it to the extent that they got in the operating theatre because you'll never every get a dead straight arm and so they put me in very quickly because the recovery on the first one was so good.

So within the three months I had as much movement as I was going to get anyway so, intense physio, things like that and then you do it all at home as well. You work on it all the time.

Oh yeah, when, when you wake up you know the following day and they say to you take the dressing off and they sort of look at you and say, the physiotherapist looks at you and says, 'Right come on then move it' and you think 'Oh no I can't it's too painful' and they gently lift your arm and give you that first bit of movement that initial feeling and seeing that actually move and you think, 'Gosh with all that swelling and the blood and all the marks and the bruising and everything', you think 'if I can move it an inch up and down at the moment what am I going to be like in six months' time or weeks' you know so you, that feeling straight away you think, 'Great I've done it' and that, that blocks out all the pain you go through and everything else and it's all worth it, definitely, definitely worth it.

And what sort of exercises did the physios give you to do?

Just up and down, you know, virtually at the beginning you just have to, you use your other arm to, to take the weight to lift it up and down just to get it to actually move. Once you've progressed from there you can actually use your own muscles to lift up and down. I also used, you can buy these machines that you can use for like tummy exercises that make the muscles move. I actually used those on the top of my arm to, to try and bring back some muscle because through the years I've lost all my muscles at the top of my arms so I have no real strength. 

I found that helped as well and then once you get the upward lift of your arms then the next one is to, to virtually bounce the arm so it is pushing down to get the straightness which I used a, a tin of baked beans in my hand because it was a weight on it, to, to stretch the tendons because obviously being fixed in a position for a long time your tendons also shrink so, it's quite a lot of work but it is well worth every minute of it. You know you do appreciate it in the end and you find that doing your normal everyday things which you start to do, I started to do a bit quick, but you do them, you're exercising anyway because your using weight and lifting and your moving the arm. I don't think I ever did any twisting movements on the arms, it was always just sort of virtually up and down and then you get your straightness and your, your bend from that.
 

Moving from one consultant to another was quite straightforward.

I had a particular rheumatologist for ten years and have actually transferred because I've found that I didn't feel that I was getting the care that I thought, you know I thought I you know I should be having. I can't say that I didn't, I, I felt that I wasn't treated as fairly as I could have been, I, I you know, I know people who have gone private and have been treated so differently and I just think that there is a big, you know, there is a big thing there.  

So I did actually transfer consultants and I, I wanted to do it a long time ago but I felt that it wasn't the right thing to do even though I would be better for it. I don't like to upset people so I bore it as long as I could but in the end I did have to change consultants which has made my life a lot happi' a lot easier.

And actually changing over, you know, was that a you know straightforward process?

Yeah, very easy... you don't even have to tell the consultant that you are doing it. You just go to your GP, you explain your reasons why. They don't actually have to tell your consultant what your reasons are. They just write to a new consultant for you or whoever you decide to go to 'Would you please take over the care of this person' and they agree or, or they don't agree you know it's as simple as that. It's very straightforward and I don't think they would be they'd say no to anybody. It's a straightforward thing and you do have that choice.

And it's worked out for you?

Yeah very much so. Definitely. Good move.

Surgery for her elbows changed her life and made movement much easier.

Before I had the elbows done, I was fixed virtually at like a 45 degree angle and I used my shoulders to move forward and backwards to give myself reach and things like that. It affected me with everything. I couldn't reach into cupboards to get things out. I couldn't, you know, to get down to the floor it was, you had to reach so much further. It affected absolutely everything.

When the first elbow was done I noticed very, very quickly how much I had. I mean, within, the next morning they take the dressings off and make you move it and that's frightening 'cos it's huge, it's black, it's horrible but you can already see an improvement because you have a virtually straight arm which you haven't had and you know you can get it back to the bend. You just need to keep the straight so it has to be kept into a splint for a while but it's amazing I, it's the best thing I ever had done. Yeah, definitely. Changed my life.

She is sure that tomatoes make her arthritis worse.

I was advised no red meat but that's my favourite [laughs], red beef or steak, blue if possible and I tried to eliminate that, I did try to eliminate that. The one thing I have found that I cannot eat is tomatoes. If I eat tomatoes, which again I like them in the fridge, cherry tomatoes and I just pick them up and eat them. If I eat them, I know the next day. I, they, it must be, is it an acid in them that just make you feel horrendous? And it just goes to the joints apparently so I have to just eat them few and, no less than often I suppose, or not very often yeah.

And when you say it goes to your joints - pain, stiffness or?

Yeah, just, you just, I think, I don't know how you know but you just know you've eaten so I just avoid them if possible but I do still eat them but just not as many.

She wasn't told for a long time that she could claim benefits. She had to fill in a 20 page booklet.

Yes, Disability Living Allowance and Personal Care Allowance. I get the highest rate of disability and lowest rate of personal care. That's the only ones I get.

And what made you sort of apply for those or..?

Well, I didn't know about them for a long time, I didn't know there was any such thing  and then one of my friends, one of her friends actually came to stay with her and she just said to me one day, 'Do you claim any benefits?' and I said 'No' because I didn't, no-one told me, no-one said anything about them. And she said 'Ooh, just phone up DLA and they'll send you them forms' which frightened the life out me, twenty page booklet that you fill in and they ask you every question possible and was very shocked to realise that I could actually claim. Didn't know, didn't know anything about it because you're not told anything like that you're not told anything about that which I think is, is actually wrong.

Hmm, and so, was the process, once you'd filled forms in, was the process reasonably straightforward or did you have any ?

Yeah. It's quite straightforward. It takes a long time. Takes a long time, bear with it if you do it because it's worth it in the end but the timescale of them actually sorting out what your benefit is and when you get it and everything takes a long time but you get it in the end.

Although very supportive, she thought her mother felt sorry for her due to the role reversal.

My Mum was my first port of call and I cried for ages but she was very, very good. She just said, 'You know, it's early days, we've got to just, you know, go with it and just deal with it as it comes.' She was very good, came and stayed with me and yeah, it was hard work but it was, it was good. She was very good.

My Mum, I've more recently, last, especially last year when I had the two replacements done, my Mum was very, I think she was quite upset in one way the fact that she is of her age and is more capable than I am. And she went through a phase of finding that very hard to deal with, that she was doing the things that I should be doing for her. It should be reversed roles.  And I had to sort of try to explain to her that you know, I do what I can do and I don't want her to think of me as not being able to do things, I want her to just act as normally as she would do if I wasn't, didn't have anything wrong with me. It's very it, she went through a stage of, she didn't pity me but probably feeling sorry for me and wishing that it wasn't me it was her, she went sort of through that, that time. That was quite hard, yeah.

Talks about medication in pregnancy and the worry of conceiving whilst taking penicillamine.

Did you have to make any changes when you were trying to get pregnant or when you became pregnant?

I had to stop all drugs. I was only allowed on Brufen Retards maximum dose and, and painkillers when I was trying for a baby but I was told I didn't ovulate so eventually I went back on to the drugs because I was so bad, I, you know started to deteriorate again and then after about 6 weeks of being on Penicillamine I actually found out I was pregnant, on the drug and it, I think Penicillamine was quite a newish drug at the time and they said, I spoke to my gynaecologist, he said you ought to contact all the pharmaceutical companies sharp and find out because he wasn't sure if I could actually keep him or not and within three days, it was a long three days, but three days later they said that the tests they'd run were on, I can't remember what they said but it worked out that the amount I'd had in my body compared to what they had done in the testing, I should be OK and he was fine, yeah he was fine, so I had to stay off of the drugs for the whole time that I was pregnant.

The Brufen I was allowed to take up to a certain amount of weeks and then I had to change and then I just had painkillers and things until he was born.  

But the further into my pregnancy the better I got and after I think it was about the sixth month it was wonderful. It was, it was absolutely wonderful, it was like I had the best drug that there was and I said then, 'Can't you make this hormone that you produce when you're pregnant' because you just feel so good.  

It took a long time to work and it was gradual, then all of a sudden it was amazing and I was really good so I enjoyed my pregnancy which was good but then once [son] was born on about the fourth or fifth week it hit me pretty hard again. But it was good for the time I had it.

So did you go back on to the drugs then?

I went back on to Penicillamine but the problem was that for some reason, whether it was a hormone change in my body, it didn't actually work for me when I went back on to it the second time so then I had to change on to something else from there.

Taking her young baby out in the car and shopping was frighteningly difficult, so she stayed in...

Yeah, it affected me quite a bit, I found I couldn't actually, when [son] was born, I couldn't actually go out of the house at one point, because I came across every obstacle possible, I think. I couldn't hold him in one arm to shut the front door so I'd have to carry him to the car with the doors open.

Can't undo, you have to go and unlock the car before you go out of the house because you, you got to do so many journeys to do one simple thing which is walk from your house to your car. But you can't, you have to unlock and open a door in your car, open your, you know, have your front door open, carry your baby out, and then do it all to come back in again. 

And I, it just frightened me so much. And then you come across seat clips, baby's seat clips, I couldn't push the buttons because it was push into a hole and I couldn't, I didn't have the strength to push it in to let him out. I was actually sat in my car outside for half an hour one day because I'd put him in the seat and then couldn't get him out. Luckily I had a mobile phone and phoned a friend and she came and got him out of the car. But things like that just frightened me and I stayed in for a long time. 

Even the Sainsbury's trolleys, the clips, you can't un, undo them, you can't un you can't push, you haven't got enough push in your fingers to undo the clips to get the children out once they are in there. And I stayed in for a long time and then one of my friends said 'This, you've got to stop, you've got to go out'. So I was taken out but they would watch me do the things not do them for me. 

They would, and then if I got stuck I always had somebody with me and that's how I learnt to go back out again and  eventually started to shop again on my own. And the local stores have got lovely people who now recognise me and as soon as they see me they come and pack for me and they put it in my car and I tend to do shopping when I know someone's home to help me lift it in. And I sort of work round other people now  so I'm not completely on my own.

It was difficult for her especially in the mornings, so her young children had to learn to do...

Not really, I was fortunately where I lived at the time was literally I was in a flat and I had to just go down the stairs and the school gate was virtually on my doorstep. So that was good as they grew I could, I didn't have to walk to school, I didn't have a long journey to get them to school. I had good friends, again, that the days that I couldn't down the stairs they would take them to school for me. 

They had to learn to dress themselves and bath themselves and things like that really early. When my mum was there obviously they played for nanny, and nanny would dress them and bath them and things, but they did have to do a lot very early on for themselves. I did try to do as much as I could with them, but it was, it's very hard. It's very hard, I mean, some mornings I would have to virtually fall out of bed onto my hands and knees, crawl to a door, and pull myself up on a door frame to actually get to standing. 

And then to have to try and dress children with hands that I couldn't do buttons, I couldn't do zips, I couldn't do coats up. All sorts of things like that I found extremely hard. Didn't know of any of these gadgets that you can buy now that you know, you can button things, and zip hooks, and things like that. You try to make things yourself with a bit of wool and pull zips up, and you know, little things like that you had to try and make for yourself. So now I know there's you can go out and buy things like that. [laughs] I wish I could have it over it again.