Pat - Interview 59

Age at interview: 54

Age at diagnosis: 25

Brief Outline:

Pat was diagnosed with rheumatoid arthritis aged 25 but it took almost three years and a progressive deterioration of her symptoms for her to get an appropriate treatment. Her disease has remained active and to date she has had ten operations and four implants. Pat participated in a clinical trial for a newer drug called Golimumab (Simponi) but the therapy failed to improve or control her rheumatoid arthritis. She is due to start another biological therapy; Rituximab.

Background:

Pat is married and has two daughters aged 29 and 20 and no longer living at home. Pat is a housewife and does two hours a week of voluntary work in her local community centre. She says it helps her keep in touch with her community and provides an occasion to smart up. Ethnic background' White British.

More about me...

 

Pat wrote her own biography

 

Just six weeks after her first daughter was born, Pat then aged 25 started having difficulties moving her arms and knees and trying to walk. She went to her GP who put the symptoms down to just “being a new mum”. The stiffness of the joints, pain and a general feeling of being unwell continued. The initial consultant she saw diagnosed her with mild Rheumatoid Arthritis even though her fingers had already started to bend, but gave her no treatment.

 

The next few years were unbearable with the pain and fatigue, and now also having a small child to look after. Pat went back to see her GP who instantly referred her to another consultant. So it took nearly three years and a progressive deterioration of her symptoms for Pat to get appropriate treatment. Her consultant started her on Penicillamine, but her kidneys were affected by it. She was then put on Gold Injections. Since 1985 until 2010 her main medication has been Methotrexate.

 

Pat’s Rheumatoid Arthritis has remained active and over the years it has affected her in different ways. At the age of thirty, Pat’s ability to walk was very limited, as the disease progressed she could only manage 10 or 20 yards at a time, she found this so upsetting as she could not even go to the park with her young daughter, and became virtually housebound. In 1988 age thirty Pat had a hip replacement. Her disease continued to be active causing a great deal of damage to her joints. Her hands and fingers started to twist.

 

From 1997 to date of interview (5^th October 2011) she has had ten more operations including four knuckle joint replacements and one ring finger replacement, and other corrective surgery on both feet. Pat indicates there are short periods in which she feels fine but knows that the disease is still very active and then discovers another bent finger or a nodule on another joint.

 

In 2010 Pat was invited to take part in a twelve month clinical trial for a newer drug called Golimumab. She met the criteria' her disease was active despite having tried other medications. She had one auto pen injection of Golimumab each month, given at home by her husband for a period of six months. After the six injections, if the trial participant still met the criteria they either continued treatment at home for a further six months or were given the drug by an infusion administered at the hospital. This was decided by the trial study team. Pat was chosen to have the infusion for the remainder of the trial. Pat said unlike the autopen injection the infusion gave her bad headaches.

 

Pat said she felt and looked well while in the Golimumab trial, but at the end of the trial the test results revealed that the new drug was not controlling the disease as they hoped and she felt that the unknown long-term side effects of Golimumab were too high a risk for her to continue. But worse, she said, was about five or six weeks after she stopped the drug her flare up started.

 

She could hardly walk again or go out and said it just felt like 29 years ago when it all first began. Pat was due to start another biological therapy; Rituximab, but she had a foot ulcerated ulcer and had to wait for this to heal. She had had this ulcer for over six months, which caused walking problems, and attended foot treatment clinics each week. The main reason why the ulcer did not heal was the joint damage on her foot and the pressure on walking. Pat was due to be a grandmother for the first time and did not want to spoil her experience by having a flare up or a reaction to Rituximab.

 

One thing Pat got from the clinical trial experience was a better understanding of Rheumatoid Arthritis. She indicated that no health professional before had fully explained her condition to her and the damage not only to joints but to your internal organs as well. Pat was told that probably the nodules she can see on her hands and feet are most likely to be on her internal organs too. She says this is worrying her now. Besides one of the doctors who assessed her at one of her monthly visits while on the trial drug was puzzled as to why Pat had not been offered before another already licensed treatment such as Rituximab.

 

For almost thirty years, pain has been very much a part of Pat’s everyday experience of living with Rheumatoid Arthritis and it has affected her life in several important ways. She obviously did not know she would have this disease after her first baby was born and how it would destroy any kind of normal life and the joys of being a mum. For example, she was never able to do the things other mums did like helping with school outings and so on.

 

Although she loves her daughters very much, she wished at the time of discussing having a second baby that medical professionals made clear the serious health problems of having Rheumatoid Arthritis and the effects it would have on her mobility etc. She says it is not easy and felt a burden to all the family. She now feels guilty about having another child because she could never be the type of mum she wanted to be for her children. Pat said in her interview that if this is a hereditary disease and her girls were affected she would find this very hard to live with.

 

As a wife Pat is aware that it could not have been as she put it “much fun” for her husband. To cope with someone who is suddenly classed as having a “disabled wife”, who was so restricted at times, often crying with severe pain and very irritable at times and in need of practical help and support. Pain, fatigue and lack of sleep has also affected her emotional well-being, she has had anti-depressants on rare occasions. Her husband and two very close friends of hers provide the practical and emotional help and support she needs.

 

Additional information April 2012

October 2011, Pat now has a lovely grandson.

 

Pat started her new therapy Rituximab, and had the first infusion in November 2011 and the second two weeks later in December 2011. She said she is feeling alright at the moment and does not seem to have experienced any major side effects.

 

In February 2012 Pat had surgery on her foot to try and help with mobility and to heal the ulcer. All toes were fused and realigned, she feels there is some improvement and the ulcer is beginning to heal after a period of 10 months.

 

Pat felt well when on Simponi but test results showed that it hadn't made any difference to her RA. Pat withdrew from the trial.

And why were you put on Golimumab?

 

Well I think they just asked me to take part in the trials of it really because I was a candidate really and still obviously having all this disease activity even with the Methotrexate. Well then suddenly last year they must of said, thought maybe put me forward and met, I met the criteria and that was it then, I started the six injections at home and each month, you know, one a month and then I can’t remember if it’s 3 fusions in, you know, I had to go the hospital, have the fusions done and then they did say, I didn’t, I failed. I failed.

 

What do you mean?

 

Well, I felt really well and everyone said, “You look really well.” I seemed to be walking a bit more than I could, I did put on nearly a stone in weight actually, I didn’t like that much but the ESR and, you know, the blood monitoring things, there wasn’t much improvement they said for all the, you know, the drug really and basically said, “The side effects of the drug, cos it’s still in trial, kind of drug, it’s outweighing, well it’s the help it’s given me, it’s not controlling the rheumatoid,” although I was feeling OK. The disease was still active in me body so that’s why they said, it wasn’t to do with funding, money or anything. It wasn’t controlling the disease and that was the main thing, so I stopped, I think it was April and…

 

And how did you feel about that?

 

Oh I was a bit upset really cos I thought I felt quite well and everyone kept saying, “Well you look, look really great,” and you know, yeah so I was a bit disappointed really and as I say then because, then about 4 or 6 weeks later, cos [clinical trial specialist nurse] kept ringing me, going, “How are you feeling ?,” I’d go, “I’m fine, I’m fine,” then suddenly oh, no good and I was just really, really ill, you know, when the flare up come, after probably being so good, so I think me ESR went from like 24 up to 58 and the CRP went up to 77 at one time, it was really quite high, you know,

 

I think they were hoping that it [Golimumab] might have brought it down. Me average ESR is, it’s very rarely less than 20. My consultant’s not, not ever expecting that he said and I might get an 18 or something but even with the Golimumab and all my other medication, it was still 28, 29 you see so it wasn’t really controlling it

There was contrast with the care she got from the clinical trials' team and her regular rheumatology team. She feels disappointed with the latter for what she perceives as their lack of support after she came off the clinical trial.

Where they controlling...?

 

Oh yes, every month the, I’d have to go to the Hospital and because it was a trial, you know, they’d send a taxi and got a taxi back home so that wasn’t a problem. Yeah, you got, a doctor always came to see you and, you know, counted all your joints, the 28 joints, I think, all your toes and your fingers and your elbows, and then I think it depended on how many inflamed joints you had and how you were feeling. If you carried on with the next injection and, you know, it was all monitored I’ve got to say and you got weighed and your blood pressure was taken on each visit and that and you’re supposed to keep kind of a little diary of any symptoms you had through that month and you know, if you felt unwell or anything like that. You know, that was the first six months and then after the six months, she said it was a toss of the coin if you stayed on six more injections or you have the intravenous fusion.

 

So were they asking you to fill in some questionnaires of how you were feeling? Do you remember the questions?

 

Oh yeah, it was probably pain level each week, or you’d put a little mark 1to 100 maybe I think it might have been, how did you feel you disease activity was and ‘do you expect, what do you expect from this drug to be like, stay the same, to be improved, for it to go away completely,’ so that was basically the same questionnaire all the time really, pain level and how you were feeling, your general, you know, thing and then as I said every time, they’d count all your joints and they’d you know, score that really so basically that’s, always asked you was there any problems. They told me I was able to contact either the Professor or [specialist nurse] or any of the other nurses 24 hours anytime, told me to ring if there was any problems, so I’ve got no complaints about on anything to do with the trial drug, they really looked after me and you know, nothing was too much, definitely was, was no problem there. They were always, tried to you know, look after me. Appointments, I was never left waiting. If me appointment was 9.30, well I would have been seen at 9.30 so that was alright, no problems at all there.

 

So your experience at the trial was a positive one?

 

Oh yeah the experience was fine, yeah

 

So it’s afterwards sort of the kind of the care that you have received afterwards?

 

Yeah but I understand there’s hundreds of people like myself but you know, when you’re ill, it, you know, maybe it’s a selfish way, you don’t think that way, you just wanted some pain relief really and I felt more a bit let down because they knew I was on the trial drug and obviously it was quite common, I was going to have a big flare up after the drugs, I did do and it seemed to be as if, “Well she’s done the trial drug now, we’ll just plod on really.” I just thought they would have been a bit more, I don’t know what the word is, I just thought it would, I just thought he would have looked into it a bit more and a quicker appointment maybe.

Pat preferred Simponi injections to infusions because the latter gave her headaches. She found the lack of privacy in the hospital uncomfortable.

Well, obviously I, she said, “You’ve been chosen to have the fusion,” and I thought… I didn’t like that very much, not for any particular reason, it was it was just a ward in a hospital and it just wasn’t, it was just really dreary.

 

It’s like six, seven people sitting with drips in and if you don’t like looking at other people with drips in, it wasn’t very cosy, you know. I thought it could have been more of a living room set up. If it was only a bit more colourful but it wasn’t you know. I used to dread going really cos I thought, “Aw to sit in here for, but it’s like, they put a saline solution through and then they gave you an antihistamine so you don’t have no reaction and then the drip goes through so it can be two hours or more, you know from start to finish really, so.

 

And it’s not a nice environment?

 

No I didn’t think so actually, because I thought they maybe, they could have had little, little like curtains across, you know, each others chair cos we’re all strangers and we all were having things you just, it was, you know, it made you sleepy sometimes, everyone was looking at you and, I just thought, ‘Oh no, I would rather have a curtain and sit on me own really,’ you know and it was a very dreary hospital room obviously, you know, but yeah that, that was the only thing. I just thought it could have been a bit more cheery, maybe cheery is the word.

 

And how did you feel afterwards?

 

The first one, they gave me antihistamine, I was really on Cloud Nine, floating cos I’d never taken an antihistamine in me life so I was really, really drowsy to the fact the nurse who was on charge, he said, “Why don’t you go and lie on the bed.” [Laughs].

 

There was a bed in the ward, I kept, I said, “I keep falling asleep,” then it clicked on that it was the antihistamine really so that was OK and then the headache. I’d say instant headache when the Golimumab started to go through, definitely like a headache that could last up to four hours... each time of the fusion, it was a headache.

 

And after four hours you would...?

 

Yeah well it, it kind of just go off but it was just, you know, one of those headaches that’s in your head and you know it’s there. You can still do your, come home and do your meal and things but you knew it was there kind of this headache but as soon as that drip started with the drug, definitely headache.

 

And you didn’t have a headache when you were using the pen?

 

No, no, no

 

So it’s different?

 

Yeah I’d say so. The pen’s sort of quick and maybe, I don’t know, is that a smaller dose or something? It goes by your weight [I’ll have a little drink] it goes by your weight doesn’t it really?

Although Pat felt better on Simponi, test results showed that the level of disease was unchanged. She has been offered B cell therapy' rituximab but she is apprehensive about trying a new drug.

Well the plan was to go on Rituximab after I’d stopped the trial drug, I can’t remember what date it was now but in between the start date of the Rituximab I had this ulcer under me foot and it was infected you see, so then when I rang them she said, “You can’t have Rituximab or while you’ve got any infection, while you’re taking antibiotics, while you’ve got any, you know, the podiatrist said it was a chronic ulcer and was 4mm deep so it’d had been quite sore so I’m none the wiser of what I’m supposed to be doing at the moment really. So as I say, me bloods have come back again today so it’s increased from 28 to 58 again in a month but yeah, so I’ll, so it’s definitely not under control at the moment, is it really?

 

What it was, just a basic talk and saying, “Well, you know, it’s probably a flare up,” and that, that was about it. I had two, I had a steroid injection in me shoulder and one in the top of me thigh and that was probably it really till they said, “Well if you meet the criteria for Rituximab but we’ll take it from there, so that’s really about it. I haven’t really been.

 

And meeting the criteria, what does that mean?

 

I think I’ve got to be active arthritis, maybe still got to be active which it was at the time. I think basically that you’ve got to have tried certain things and your arthritis is still active enough. I haven’t actually decided if I want Rituximab being honest. They, they’ve put it forward to me and one of the doctors who came up to see me on the trial basis. She said, “I don’t know why you have never ever been given it ever before”. She said, “I just can’t believe you’ve never been offered it actually”. She was very surprised they’d never offered to me that so. Anyway that’s been the next thing, is that but I don’t… what’s frightening me is if I take it and then I’ve got to have all this flare up again, if they say I’m, it’s not working and that’s me worst nightmare at the moment is I don’t want to go through all that pain again. I’d rather stay as I am and cope with it than have the flare up I did have but I wouldn’t like to experience again just, just yet anyway really.

 

So I, the experience that you had with the Golimumab?

 

When I came off the Golimumab and the flare up was just like day one when I was, you know, when I first began. And I don’t really want to go through that at the moment. Not this year, not this side of Christmas anyway. I really don’t want to go through all that.

 

And have they given you information about Rituximab?

 

Mm I had a leaflet through. I did ask the nurse the other week. I said so, so basically a giant booster then really, like a giant steroid kind of, but it’s not a steroid really, it’s just like big, probably lift in other ways. It’s not cure; it’s probably a few months at a time. She said , “It takes,” and did she say, “it takes a few weeks to get into your system but once it’s in, it’s there for about six months or whenever my arthritis is, is starting to creep again and then you’ll do it again so it’s always going to be monitored in that case really”. I just feel it’s just more chemicals which I’m not, I don’t feel, I can’t say I’m looking forward to going on it actually at the moment, I don’t know why. I’m just not very positive about it at all. They’ve assured me it’s really good and it will do me

Pat was diagnosed in 1982 at the age of 25 and talks about the many operations she has had since then.

In 1988 I had a hip replacement 'cos I really couldn’t walk 5 yards at all. I was OK round the house, round the kitchen, you know leaning little, I just couldn’t walk down, I couldn’t walk down my hallway and it’s probably what fourteen foot or something. Me legs shrunk to about that much, I don’t know how deep that is, you know, when you put your knees together, that knee was dropped, that’s how much I’d worn away, the joint had worn away and I had that done in the January of 88 and that was quite successful, touch wood, I’m still got the same one anyway. And then in '97 well me toes all started to get real big bursars on them and things like that and I had, I had the toes straightened and a few other pins put in me toes and then 2 years later, '99, then me left hand had really, really gone over like, really down like that so I had to have them, and they’re plastic implants, those now. So it is much straighter than it was although you know, it doesn’t look like but it is much straighter and although there’s not much, there’s not much bending in them he says, if you leave them too far, they’re unrepairable. Once they’ve really gone over too far, those joints like that, we can’t get your fingers back in line. So you know, obviously I went along with that, so that was '99.

2004 that finger had a really big nodule on it that I kept knocking, you know, and I just said, “Can you take the nodule off?” and the Consultant said, “No,” he said, “A new joint,” but he said, “I don’t think it’s going to be successful because of your other problems,” but the Occupational Therapist who works with him saying, “Well yeah I think she needs to go have it done.” She persuaded him just to do one joint and not them all. So I also, I’d say, it’s probably not bad , it doesn’t bend, you know, it doesn’t bend much but it’s alright and yeah so that’s it really. I do thing these are going actually and I’m sure within, within the next few years they, see if I relax them, they’re just going like that. So I’m probably need to have them done but I’m trying to put them off because I am right handed so there’s not much I can do with me left hand you see. I can’t lift and I can’t grip and I can’t do anything and I know once I have my right hand done, I’m going to be really, really not be able to do anything, you know.

 

Pat is receiving Incapacity Benefit and expects to be assessed again soon. She has been assessed several times in the past. Her attitude is to comply with whatever they want her to do.

I think I’m expecting one of those forms aren’t I? I think we’re all going to get anybody on long term disability is expected to get these letters from, you know, the Government took over aren’t they or a visit to, I had a few visits, they actually have had twice where they just came and knocked on me door actually.

 

Without?

 

Well they were without kind of any warning, no. Ah no, no, no. Really and I do a little voluntary job over in the Community Centre and it was this particular day I had gone to the job. I’m only sitting on Reception, I’m not in and working, I sit there. It’s just nice to be able to speak to different people and it gives you an opportunity to just put some nice clothes on and not be, you know, stuck in the house kind of thing and they’re very good to me. They know if I’m not well, I don’t go and so I hadn’t long got over and my husband rang me, he went, “There’s somebody’s knocked for you from the Benefits people.” He said , you know, he said, “Well she’s…,” he said, “She’s gone out for lunch,” cos he didn’t know what to say really, didn’t want to get me in trouble or them in trouble but they know I, the Benefits people know that I do this 2 hours a week, it’s not a problem and she said, “Oh well I’ll let you off,” she said, “I’ll be back tomorrow, tell her to be in.” So she said, she was alright, she said, “It’s just a check-up to make sure you’re getting the right benefits,” but I don’t think so. For some reason they do check up on you and I’m the one that keeps getting recalled for medicals. I keep getting recalled to go about my Job Seekers Allowance which I don’t get Job Seekers Allowance so I don’t even argue. I think I just go. So, no, I’ve had a couple of visits, I think I’ve had two unexpected ones and I had a doctor who came out once to review me, well me claims and that and I’ve been about twice to the doctor, so they sent me to the job centre for my Job Seekers Allowance which I don’t claim Job Seekers Allowance but, you know, I don’t argue, I just go and that’s the end of that, so, you know, I’m expecting this big, I’ve heard there’s a big booklet on the way for all those people who, you know, are on any kind of disability allowance really.

 

So do you think they are going to assess you again?

 

Oh I think so yeah. I think everybody, so I’ve heard, on the TV. Isn’t that what they do to anybody who’s on long term, you know, benefit really. I think it has to be done, I’m not saying it doesn’t you know, there’s lots of false claims, I understand that and I think I’ll just have to wait and see what happens when they come really. You know, yeah it’s got to be done I suppose really. I am a bit nervous about it cos I do feel as if I’m a grabber maybe, I shouldn’t be getting them as I just don’t like anything like that. I definitely don’t think I’m going to appeal anyway. I don’t think I’d cope with it really, it’s just not a nice feeling and me friends had to do it, you know when they stopped, she was very similar to me and they stopped her things and she’s just a complete nervous wreck having to go to tribunals and it’s just dreadful.

 

I personally do feel that oh no, I can’t cope with all that if they don’t think I deserve it, well there’s not much we can do really, you know.

 

But how would you cope financially?

 

Well I’ll be v

Six weeks after her first child was born Pat woke up with stiffness in her arms and legs, she went to her GP who told her it was 'just being a mum'. It took more than two years to be properly diagnosed and be given the correct treatment.

Right well that would be 1982 when I’d just had me first daughter, she would have been about 6 weeks old and I kind of woke up and just couldn’t move any, me arms or me legs and so after a few days, I went to the GP, a man GP, who said, “ Just being a Mum, it’s just this, it’s just your nappies, cos we had to wring the nappies out then , just all these things, pushing your pram,” and me sister had rheumatoid arthritis, you see probably as worse, worse than me and I did say all this but he said, “No, no… he said, “It’s not hereditary” and just gave me normal inflammatories I think which went on and on and on and I think deteriorated more and more and more and then eventually I got , I went to see a Professor [name], I think, in the Royal Hospital in [city] and he just said, “Yes, I had one thing which was slightly going really bad by this time and you’ve just got a mild rheumatoid arthritis and I don’t think I should give you any of the, the stronger drugs, you know, the Gold or anything like that .” So that was it, went on a few more weeks, really, really ill and I went back to my own GP and she referred me back to Dr [name] at the [name]Hospital, I was probably 28 at this time probably gone through two and a half, three years of just being told it was just being a Mum and this, that and the other, so anyway, Dr [name] immediately, he says, “You need the proper treatment,” and he put on Penicillamine (DMARD).