Pearl - Interview 62

Age at interview: 60

Age at diagnosis: 40

Brief Outline:

Pearl was diagnosed with rheumatoid arthritis (RA) in 1991, aged forty and was put on methotrexate. Eighteen months ago and initially as part of a clinical trial, she started to take a newer anti-TNF therapy; Simponi. Her current treatment also includes methrotrexate, but in a smaller dosage.

Background:

Pearl is married with two grown up sons and a grandchild. She is a retired bank clerk. She had to take early retirement due to rheumatoid arthritis.Ethnic background' White British.

More about me...

Pearl was diagnosed with rheumatoid arthritis (RA) in 1991, aged forty and was put on methotrexate oral-form. She has taken this treatment ever since but now she takes it in injection form as it began to affect her stomach. Alongside methotrexate, Pearl has tried other medications such as leflunomide and sulfasaladine but no single, or combination therapy succeeded in controlling her RA. Pearl would feel fine for a couple of weeks and then pain would start to affect her. Furthermore, every twelve to fifteen weeks she would experience episodes of very painful and debilitating flare ups that left her being unable to move. The flare ups affected her jaw, ankles and shoulders. This pattern of having short periods of feeling well followed by severe periods where she couldn’t be able to do anything remained constant since her diagnosis until she started her Simponi treatment.
 
Pearl was invited by her rheumatology clinic to volunteer for clinical trials and waited for 18 months before she had the chance to take part in the Simponi (golimumab) trial. She said she was given all sorts of information about this new drug by the specialist nurse, but was still very concerned about side effects and therefore, undecided. She spoke to her consultant, who answered all her questions and explained what they so far knew about the potential side effects of Simponi. Afterwards, she felt reassure and decided to go ahead.

The Simponi trial period lasted twelve months and during that time she had to go to the hospital to have her monthly injection and checkups. Now, she receives a monthly delivery of the Simponi at home and she injects herself. In terms of follow-ups she now goes to the clinic once every week for her methotrexate injection and once a month for blood tests. Soon after she started on Simponi, her methotrexate was stopped because her liver was affected by her combined therapy. It is only recently she has been put back into methotrexate but at a lower dosage. Liver tests are fine.

Blood tests results are showing that the level of joint inflammation has gone right down but Pearl is not yet in remission. Since starting her Simponi treatment, Pearl has not had repeats of the very bad flare ups she used to have. She still experiences various levels of pain but she feels able to cope with it. Moreover, she is not as exhausted as she used to be and hence, able to have a social life in the evenings.

Pearl thinks that the care and support she gets from her consultant and nurses is second to none but she advices doctors to talk to their patients about the possible impact of RA on sex life. She thinks that such an issue should be discussed early on to help couples better understand and manage this aspect of their lives.



 

Pearl explains how her participation in a clinical trial for Simponi (golimumab) came about.

 

And how did it come about that you were put on Simponi? Can you tell me a little bit more?

 

When I was going to the [name] hospital, seeing the rheumatologist, the nurses, the rheumatoid, you know, and they’d say, ‘There’s different trials coming up. Would you be interested? And if you’re basically qualified for them’ you know, ‘Would you go for it?’ Which I always said, ‘Yes’. But it just went on from months to a year to 18 months to two years and nothing ever used to come until this particular one, the Simponi one. And they contacted me and that’s the first really big trial I’ve been on other than the [name].So that was 18 months ago I started that and there were no problems at all. I just went to the hospital every month and had the injection. No side effects and I’ve been, you know, I’ve been great with that. Yeah.

 

And how did they explain Simponi to you? What were they hoping to achieve when you?

 

They asked me, ‘Did I, what would I expect from it. Would I expect a total remission or, you know, just feel better.’ But the major thing with rheumatoid arthritis is the tiredness. It’s like a tiredness you get. You don’t feel well. You get the pains but it’s being tired that basically knocks you out, you know, and that’s the main thing with it. So they asked me whether, ‘What did I expect from it?’ And I just asked them whether it would get rid of the tiredness, if I’d feel much better. I would cope with the pain if I wasn’t, if I didn’t feel as tired. But it, the way it’s worked is the tiredness went and the pain went as well. I’ve still got pain in various degrees but never as bad as what I was used to. And that’s how, how much better I felt, you know. And that’s the way it’s been for the last 18 months.

 

And do you know why they invited you to take part initially in the trial?

 

I think it’s because there were other trials going on and I was never, I was never able to do them for different reasons. I don’t know whether I wasn’t bad enough or there were people worse off than me. And I was never able to do them. And then whenever a trial came up they always mentioned it and then they mentioned this one but then they got back to me, contacted me and I went on it. Yeah.

 

So the professor that looks after you put your name forward?

 

Yeah, yeah.

 

And you had to talk to him before you were put on the trial?

 

Yeah. He mentioned this and, you know, as I said he did say if he could put all his patients on it he would have. You know he thought it was that good so that’s what made me go for it. Yeah.

 

And your concerns at that time were about what specifically?

 

Its side effects. When you look at the side effects, you know, when you read the papers it is off putting, you know.

 

When it gets down to the deaths, [laugh] you know.

 

After the clinical trial finished, Pearl started receiving regular deliveries of her anti-TNF medication at home. She does not recall PCT funding ever been an issue.

Do you know if you are still on this trial or you are past the trial period now?

 

I believe I’m passed the trial period because I was. I went on a regular delivery of them after 12 months. So I get a delivery to the house now each month and the nurse usually rings up to check, you know, how you are doing.

 

And how was it before when you were taking part on the trial? You had to go to the hospital to have it done?

 

I went to hospital every month, yeah and they checked, you know, they checked you over seeing the doctor there and everything was fine. The only problem I had initially with it was taking the methotrexate as well. It made the liver count, your liver profiles go high. And that was a problem. I came off the methotrexate for a few months and it went back to normal. And now I am back on the methotrexate but I’ve been going on it gradually, you know, just small amounts. I’m getting up to 10mg. at the moment and I’ve been fine.

 

I don’t know whether there is a time limit, [cough] excuse me, a time limit. [Anti-TNF specialist nurse’s name] said you could be on it now, you know, for as long as it takes basically. But I don’t know. I don’t know whether. Things change don’t they, you know. The money changes and things so I don’t know whether I’ll carry on but I’m just glad I am on it at the moment, yeah.

Pearl describes the quality of care she receives at her anti-TNF clinic.

Yeah you can see the rheumatoid nurse. You can make an appointment yourself. You can see her any time. You can ring up or you can ring and for, you know, advice or, you know, if there is any problems you can always ring. So you’re not stuck on your own, you know. You can always ask questions and yeah.

 

Have you ever had difficulties in reaching someone from the medical team?

 

No, no. If I can’t get through then they get back to me and they do get back to you, you know, and arrange an appointment, yeah. They are good, yeah.

 

So you feel that you are well supported in that?

 

Yeah, yeah. If I have a problem I just. You know I know it’s on the end of the phone I can get it sorted.

 

Have you called them? Have you ever called them?

 

I have yeah, you know, when I’ve had flare ups and such and they make appointments to see the professor. You know they do that sort of thing or I can go in and they’ll give me a steroid injection. But that’s a good thing about it being on the Simponi I haven’t had a steroid injection since I’ve been on it as well. So, you know, that is a real good thing. Yeah.

 

But based on your experience what do you think they should improve regarding the consultation? Do you think there is still room for improvement?

 

I don’t think so.

 

No?

 

No with the professor [name], he is really, he is a person you can sit and talk to. He’ll, when he talks to you, you know, he bends over to you. And he asks, you know, ‘Is there anything I can do for you to make you feel better?’ He’s that sort of a man. He’s not like your typical doctor, you know, he understands and he cares. I couldn’t really think of anything to make it, to make it better. You know they are all very good.

 

Ok.

 

And they are all good with me. Its first names, you know or, ‘You’re ok Pearl.’ And you feel like part of, like part of a family basically because they ask you how you are and they know you when you go. I’ve been going since 1991 so, I mean, it’s been a lot of the same faces so. You know.

 

You said something very important when you said that they understand and they care?

 

Yeah you get that. You get that feeling. It’s not you’re going in as a number and you are going through to see a doctor who doesn’t really know you but I’ve known the professor [name] and he knows me. So…

 

So it’s more of a personal?

 

Yeah, yeah

 

Yeah kind of involvement.

 

Yeah and you don’t have to go in and explain everything because he understands where you are up to. So and that’s, that’s a good thing about it. You’re not seeing somebody different all the time which does happen. It does happen and they don’t know anything about you, you know.

 

You have had this continuation of care since you were diagnosed?

 

Yeah. Even when you’re going in to make your appointment, you know the girl on the desk I’ve known, you know, I know her first name. ‘How is your family? How is your dad?’ and all this, you know, and that all makes a big difference. Yeah.

 

For you to feel more kind of comfortable

Pearl indicates that since starting on anti-TNF therapy she has more frequent colds and has to take antibiotics to get better

I do get chest infections [cough] a lot. Excuse me. That’s the only thing, rarely, you know. I think it’s with the low immune system they say you pick, you’re picking infections up.

 

So you have noticed that you get more?

 

Yeah I get more chest infections, yeah, yeah.

 

Do they go on their own or in some cases do you need to take antibiotics?

 

Yeah all the time.

 

Really?

 

Yeah because I got this. I only got this Friday. Saturday it was really bad, Sunday and I had to go to the doctor’s on Monday and he gave me antibiotics because the crackling was on the chest and that’s only in a couple of days, yeah.

 

And you think it is because of your immune system is weak…?

 

I think so yeah.

 

And how often do you get these?

 

I get them every year. I get maybe two a year, not a lot but it’s just that and I’ll get them every year where before I didn’t, you know. I didn’t. Excuse me.

 

Have you noticed any other side effects apart from the chest infections following?

 

No, no. that’s the only thing is the chest infections and for two months I had the headaches which they’ve gone. So I don’t know whether that was a bit of a flare up of the arthritis and I’ve had it in my head because I get it in my jaw and you get that same tightness, you know when it tightens up so it could have been a bit of a flare up as well we had.

Pearl thinks that the issue of sex after being diagnosed with RA can affect relationships and should be discussed by doctors. It is an important subject, and in her experience, neglected by health professionals.

I think they should know that it does affect you socially and it does affect you mentally. You know, you do get depressed. It’s not just a pain. I think there’s those options to it. I don’t think a lot of doctors realise that it affects your life. It does affect your life. It’s not just you’ve got a sore leg or arm it does affect the whole of your life and relationships with your family and such, even with your husband, you know.

 

In which ways?

 

You know, do you know what I mean without. You know the nurse would say to me, ‘Take two panadol if you think you are going to have a relationship with your husband’. You know things like that, it does affect that way because you can’t, you can’t move. You know you’re restricted and there’s that sort of aspect to it as well which I don’t think a lot of people understand, you know. Yeah.

 

And how have you managed that situation I mean?

 

That’s what I do. I take two panadol [laugh].

 

[Laugh] That’s good advice.

 

And you just laugh about it [laugh]. Yeah, yeah.

 

And as you said there is an extra strain put on a relationship?

 

Yeah, yeah.

 

I mean and how do you go about it apart from just talking about the situation?

 

Well it was when. I’ve had it for a while so it’s when you’re younger as well you find all this out but it is, it’s talking about it. Saying that you are not able to do things because of what you feel. You’ve got this or you’ve got that and you can’t do it. And it is talking about it. You’ve got to talk about it because they don’t know if you don’t. You’ve got to, yeah.

 

Did you receive any advice regarding this particular problem?

 

No, nothing, nothing, no.

 

So it’s not mentioned?

 

No, no it’s not mentioned. That’s why I think it should be, you know, brought up. Yeah. I think you would find it is a big, a major thing in people’s lives and couples, you know.

 

Yeah because it affects your sexual relationship?

 

Yeah, yeah because it’s not just for older people. You get young people with it don’t you? So it must be a big thing for the younger people, yeah.

 

How old were you, 40?

 

I was 40 yeah, yeah.

 

And what did they discuss at that point regarding, because you were put on methotrexate and were you also using contraception at that time?

 

No, no I wasn’t because [my husband] had had a vasectomy anyway so I wasn’t using anything like that. Yeah but nothing was spoken about. They didn’t speak about anything. It was just that you were going on methotrexate and it would help your arthritis and that was it.

 

But what about a woman of 40 who can still get pregnant?

 

They did, sorry they did say when I went on the methotrexate about that but I was aware of that but other than that there was nothing said. I was aware you couldn’t get pregnant if you were taking it but…

 

The part on how you get pregnant wasn’t discussed?

 

Wasn’t discussed at all, no.

Pearl's employers provided her with what she needed to work around her RA but she decided to take early retirement. It was just too difficult to cope with full-time work and RA.

I used to work. I gave up work through the rheumatoid but I used to work full time as well and I found it extremely, you know, really hard. It was going to work, coming home and going to bed and then going to work. It was one of those, you know.

How long ago was that?

 

I finished about five years ago, work. You know I took early retirement and then it’s when the trial started it was after that and. Yeah.

 

So you weren’t able to cope with work?

 

No I couldn’t have coped, no, no. It was too much because I was on a computer, you know, keying in and I have it in my hands and you get around it. I was using a pen or a pencil to press the keys. You get around it but it, they time you. You know it’s all different now. You’re timed on what work you do and I couldn’t keep up so that’s why.

 

So did you have any problems sort of getting early retirement or not?

 

No, no because they knew I’d had the rheumatoid for a while so they were aware of the way I was. They were very good. They got, I had a chair. I had the desk fitted so that I could work around it, you know.

 

Ok so they…?

 

Oh they were very good, yeah, yeah.