Interview 01

Age at interview: 29

Age at diagnosis: 25

Brief Outline:

Psoriatic arthritis diagnosed at 15 then RA at 25 ('99) but delayed as negative blood tests. Initial treatments DMARDs and steroid pulses. Currently steroid tablets, NSAIDs, Methotrexate injected weekly & Anti-TNF Infliximab infusions began 2 months ago.

Background:

Pensions administrator, reduced hours to part time. Diagnosed whilst living at home now cohabiting. No children but considering for future.

Was initially told she had psoriatic arthritis but she read about it and thought it was...

My doctor, who wasn't my normal doctor he was just a practice doctor just said to me take Ibufen and go away basically. And that was in the January and then by May my knees were swelling, my hands were really swollen and I could hardly walk on the bottom of my feet. So I went back to my GP, but my normal doctor, and she done blood tests and all the tests that you could do and she was pretty sure it was some sort of arthritis but she didn't know what it was. And where I work you get private health care so I decided to go and see a private specialist and when I got to see him, when I was 15 I had, I'd don't' know if I'm going to say this right but it's psoriatic arthritis and he said it was that.

And so I started reading and my joints were not the same as psoriatic arthritis. And I got it in my head that I thought it was RA and I kept saying it to this doctor and he kept saying 'No, it's not that'. And he said, 'We've done a blood test and it says negative'. But then when I was reading it was saying that your blood can be negative for 3 years. So in the end I went back to my original doctor and I said what I thought and she was the one who said the mineral clinic are a good hospital and she referred me to them.

So that was, I first noticed I had problems in January '99 and I didn't get referred to them until July 2000, so I'd had a year and a half.

Well, like I said, the first GP wasn't understanding but then when I seen my second GP and this was my proper GP and she suggested, I suggested to her what I was going to do and she said that she thought it was a good idea. But it was basically me going to her and saying, because they couldn't find nothing wrong. But I just thought, they were pretty sure it some sort of arthritis so I thought if I go to someone who actually specialises in that then they might be able to find out what the problem was.

And what made you change from that consultant to an NHS one?

Because he kept saying it was psoriatic and I kept saying it wasn't. And he wouldn't do any more tests or look into it further, he just stuck to his guns on it and I just, I just had that feeling it wasn't what he was saying. So then I went back to my GP and I told her what I thought and she said, that's when she referred me to the clinic I'm at now because she said they were very good with people with arthritis.

And did you have to wait for that a long time?

No. I think I was possibly, may, it might have been about a month to 6 weeks that I had to wait but as soon as I went to see the consultant within a month I knew what was the matter.

Infliximab enabled her to reduce the other medication.

In February they put me forward to go on a new drug called infliximab and that only got agreed in July this year. And I started taking it in July and I've got to say that is has worked. So, I've still got to take a lot of tablets, I'm still taking methotrexate which I take 20 by injection, 20mg by injection and I still have to take an anti-inflammatory and I'm still on painkillers, but whereas before I was on them every 4 hours and then taking amitriptyline to go to sleep at night, it's just taking them as and when now, it's not half as much.

And I find that I'm sleeping at night with no painkillers and no amitriptyline which helps you sleep. I haven't taken that at all since, in that first week I did but since then I haven't taken nothing like that. But they said in time that they can start getting me off a lot of my other medication as well. And I still take steroids which is the big problem 'cos my bone density's very low but they don't know if it was a problem with the steroids or whether it was something I had before.

And when you said you reduced your steroids down to three, what were you on to begin with?

I was on, I was on 15 but then I was on 7.5 for a long time. So I went from 7.5 to 3.5 and they want me to stick at 3.5 until I've been on infliximab for at least 6 months.

So did you choose to take the dosage down?

Yes. Apparently I should have done it anyway but no-one did tell me so I did it myself. 'Cos I, I needed to know that it was working and the only way I'd know is if I wasn't on so many steroids 'cos whilst I'm on steroids I'm very good but if they take me down then the pain starts so I knew then if I got down to 3, 3.5 and I had no pain then I knew that the Infliximab was working.

The effects of the anti-TNF were noticeable after a week.

When, when I first had it done, the lady who was doing it said all the people that had recently had this noticed the effect straight away, you know, the same day and when I got home I kept willing for it to happen and it didn't and I didn't feel no different and for that weekend, I had it done on a Friday and that weekend I felt very depressed 'cos I felt no different but after, I would say after about a week I did notice that the pain was a lot better and, but the real test was to reduce my steroids and if there was still no pain that meant it was working. And that's what I did, and it did work and I've hardly had any pain since being on this infliximab.

Social services paid for a chair to lower her into the bath but wouldn't pay for other items.

I mean, it's your prescriptions is one thing which I do buy pre-payment certificate but, you know, I did speak to my doctor whether you can get them free but you can't, not with RA, which he found to be unfair. But it's, probably a month I have to get 6 different prescriptions which does work out quite a lot of money. Which I'm not bothered about doing it, but it's just something you wish you didn't have to do. And I've had to buy a lot of things to adapt the house with, you know, to help me around the house and stuff like that. And I had, my old car was perfectly fine but I had to get a new one 'cos I needed something easier on the steering wheel. It's just silly little things that you don't realise.

You said that you've got a few things round the house. [Yeah]. What sort of things have got, bought?

My mum bought me a wheelchair, that's how bad it had got with me that I, when I couldn't walk. I've got a walking stick, I've got a lot of things to help you open jars, bottles, and like specially adapted forks and knives like if you're hands are swollen they're thicker so you haven't got to bend so far. I had a bath seat and a bath bench but recently social services have actually put in a, a chair that lowers you down now. Another thing we've found, we've got to get a shower put in 'because I find washing my hair, you know, is difficult because of leaning over the bath. Now showers, I prefer baths but I feel we've got to have a shower now 'cos of that, it's just loads of little things that you, you've got to buy.

Do you think you'll get any help putting the shower in?

No, I've been told that, me and my partner we earn too much so, no. 'Cos that's one of the things I did have a social worker come round and she tried to help me with a lot of things but I had the letter back last week saying that I wasn't entitled to anything.

And you mentioned that they, they put a bath lift [Yeah] in for you. [Yeah]. Did you have to pay for that?

No, no. No, which I think that's very good as well. It's, it has helped a lot.

So they'll put that in to help you get in and out of the bath [Yeah] but they wouldn't give you the money to convert to a shower.

No, No. But it's something we will get done now anyway, now that I know I can't have it that way, then we'll just have that done anyway. 

Describes the tiredness, pain and swelling of a long term flare.

Have you ever experienced what they call a flare?

Yes. Many a time. Yeah. 

Can you describe to me what it's like?

Very painful. Very swollen, very tired, you can't walk, you can't do nothing. I just find that I'm in bed most of the time. And it sort of comes on very, you know, fast. And unless they do something like maybe inject it, then it doesn't go.

So how, how quickly do you have to have an injection for it to, sort of stop it.

I would say almost straight away. When I came back from hospital I got out on the Friday and by Sunday I had a flare. And so the next week I was back in hospital again. I wasn't in there to stay but they didn't do nothing, they just increased my steroids. And then it started to get better again. And another thing I find when I have a flare I am on painkillers all the time and I have to take something at night to make me go to sleep.

And how long do they tend to last?

I'd say between three days and maybe a week, you can get it. I don't feel like I've ever come out of a flare to be quite honest, if the truth be known. I just feel only these last few months I've felt better but before I found I was in pain every day and when people say a flare I know what they mean but I just felt I was in a continuous flare because it never got any better. You might have, I, I never had a day where I thought 'I feel great' and you know I've got no pain or no swelling. I've never had that since, since I started having this, I never really had that. So I'd say it's only this year since being on this new stuff that I can honestly say that it's been better.

Worries about stopping the RA medication to start a family.

And I think what's difficult for me is that I'm still young and I want to have a family and now all that's had to be put on hold which, that really upsets me. And it's like taking this new treatment, you're not allowed to get pregnant on it. And I couldn't even consider not being on any treatment at the moment 'cos I don't want to go back to how I was. So, I'm scar, I am scared for my future but I try and not think that far ahead at the moment but thinking about now, it does upset me. I, what I want to know is how I got it but no-one can tell me that.

I think this is, you know, providing this treatment works, they'll keep me on this one but obviously if we decide to have a family I've got to come off all of them. 'Cos you're not allowed to take any of it, if you're trying to have a baby. 

That's probably quite a big thing'

Yeah, I think that's a thing that gets to me most, that's probably something I think about every day and I was, before I went on this treatment I was thinking 'Do I want to be on it?' But then I wasn't, I didn't have a normal life before I did go on it so I had to, I had to go on it and it does scare me that, you know, maybe in a year's time we decide to have a family and I've got to be off everything for 6 months. So you've got 6 months of being off of it, then you've got 6 months of trying to get pregnant and then you've being pregnant, so it could be a long time.

So there's 6 months before  you can even start trying?

Yep, you've got to be, and that's the same with methotrexate as well. You've got to be off the methotrexate and the Infliximab for at least 6 months. 'Cos you know nothing's spontaneous, you've got to plan everything in that respect and, you know, that's another thing that I don't like.