I feel if I’d questioned it [treatment], I would have had a choice. But I have complete faith in the people that look after me. I’ve never felt any need, if somebody says to you look this is a hard drug, this is methotrexate, I think you should take this, or try it on this dose, you gonna have to have a blood test every four weeks ‘cos I want to monitor the this, that and the other, you feel confident about that ‘cos you know in four weeks you’ll have a blood test and when the results come back, it’s gonna tell the rheumatologist whether it suits you or not. I, the way it’s been presented to me, has been the correct way, and I’ve never felt any need to say why or, I’ve just thought, right, if you think it’s a good idea, it’s always been adequately explained to me and I’ve been quite happy with everything I’ve taken. Maybe that’s not a good thing, but it suited me fine and it’s, I’ve not been let down.

In those days people were given large doses of steroids long term routinely and I knew that’s what I didn’t want. So I refused steroids and I’m, on reflection I’m very glad that I did because now I don’t have all the problems that are associated with people taking steroids over long periods. But I’ve found over the years that the patient actually has to take an active role in the process of their disease.

You cannot afford to assume that all the health professionals know exactly what they are doing. They may think they know what they are doing but you can ask two different health professionals and you can get a different answer can’t you? So I think in a way it’s, it’s helped me, that I’ve been a bit of an exceptional kind of patient, I’m not the kind of patient who’ll just take whatever I’m given without questioning it. I come from a family of medical people and I want to know what the drugs are, I want to know what the side effects are. So I knew instinctively I didn’t want to take steroids.

And I went into [Hospital] because they wanted to sort out the methotrexate problem, because they said, ‘You can’t come off it because we don’t have anything else to give you. And I said, ‘Well I’m not taking it any more because” It went on for about a year the sickness thing and nobody really cared. I mean, I cared and my parents cared but the doctors they weren’t really too bothered. They said, ‘If you’re not on it then you know you’re, you’re not going to be healthy enough. And, I didn’t care. I didn’t care if I couldn’t do anything, I just didn’t want to be sick any more.

So I went in and various different doctors came to talk to me ‘cos I was under Professor [name] at [Hospital] and she has a huge team and they all came to talk to me, all of them. And then she came as well so, you know, the big top dog, and she spoke to me and I said, ‘No, I’m not taking it. You can’t make me take it because I don’t care if I’m, if I’m under 16 I’m not going to take it. And I just said, ‘No. And they said, ‘Well we’ll give you anti-sickness tablets. And I had tried those, they didn’t do anything. I said, ‘But they don’t work so I’m not taking it. So they eventually [laughs] sort of, they listened to me.

I’m very involved in how it’s managed and I make it my right to be involved as well. I think some people, I wouldn’t say they get walked over but they feel that they don’t have the right to say no because it’s difficult, I must admit when you’ve, if you have got quite an over, over-bearing consultant, I mean my consultant she has to be strong and she has to be pushy because she has to fight for a lot of people to get the medicine they need, but that also in turn means that you have to be strong and have to be willing to fight if you disagree about something. So, it is difficult but you just have to have the strong will to do it. And you pick it up along the way.

Have you felt that in the past you’ve had a choice in what you’ve been prescribed?

Very much so. With the exception of my first experience at my local hospital when I lived in another part of the country. But since then I have always felt that my, my concerns regarding treatment were taken fully into consideration and there were options. It wasn’t, ‘Well take this,’ you know. The choice wasn’t you can take it or not take it. The choice was, ‘Well if you’re, why aren’t you comfortable, can we talk about it? I think it’s the best treatment but if you really don’t want to take there is X, Y and Z. So there were always been options for me. And I think that’s quite comforting.

And, and you’ve felt you were given enough information to make a decision on?

Yes. Yes. Like, going back to the methotrexate, I was given a month cooling off before it was even agreed. There was absolutely no pressure for me to go onto second line drugs without me having had a chance to see all the information and talk to other people. I’m probably luckier than most people because of the work I do I’ve got people that I know are taking these drugs and I know there’s a big pool of support.

The same with surgery, if I did go down that route, I’ve got people that I can talk to that have had the surgery that’s been suggested so, yeah, there are, you know, there are options.

At the end of the day, it’s down to you, if you really seriously want this operation then you know it’s, they’re not going to do something that you don’t want, so you just have to weigh up if its really going to be beneficial to you or not so yeah. It’s funny how at one point they were going to do an operation on my feet, and I think they remove bits of bone from the feet, and I thought I just don’t want this, I thought surely if I can just do some exercises and just strengthen you know, show me the exercises I’m supposed to do and I’ll try and, I’ll give myself like a six month period to try and do whatever it’s got to do and see if that will help, and if that doesn’t help right then well do what you’re suggesting and I often find that that, it helps, it’s the way, you know I’ve been fine, so if I go through bouts where the bones I feel as though they’re beginning to drop again, then I sort of. I persist with doing certain exercises, and you know it holds the old skeleton into place and it’s that balance of keeping active and managing the flare ups and I know of a winter time when you’re not so active the muscles, you know start getting a bit slack and you get repercussions then from the joints.

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.

I get every choice. I get she, she will ask me, this is my consultant not my GP or anything. She’ll say to me, she mentioned the new drugs to me and she said, ‘Would you be interested in it?’ And she, she told me that it’s, it’s not been tested before so there could be long term health risks of cancer mainly, I think. Or it could, certain things like kidney failure and things like that that it can cause. It doesn’t mean that it will but it can. And so she always asks me, you know, am I happy with it, would I like to try it? And more often than not I say, ‘Yes’ because if it will benefit me now then I will take that risk because it does sound a bit morbid, we all die somehow. And if it will help me now I’m not going to live in fear of what it will do to me later in my life.

And I’m not if sure if the adalimumab might be a trial as well. I’m not sure. Because it’s new I think they may be monitoring me on it but I know I’ve answered questionnaires and things on it but I’m not sure if it’s an official clinical trial or if they just have to monitor me on it because I’m taking a new drug.

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.

I’d say it was about 12 months, just under 12 months I’d say on the treatment. And then, you know, just a review they can’t give me, at the time they couldn’t give me any more methotrexate. I was on the maximum I could be given. So it was to, you know, to be, I think it was. The trial was coming or something. I don’t really know. It was just, Would you consider that?’ You know if
They offered?

If you were suitable. Yeah they just said, We’ll put your name forward’ or, you know. And then I got, somebody got in touch with me.

So it was just basically because they couldn’t give you any more of the methotrexate?

I think it was just because there weren’t, it wasn’t settling when, you know the, it didn’t seem to be settling, I mean something to do with my blood I’d understand, my white blood cells or whatever it was that wasn’t. It was still active.

Obviously you’re still, I still get odd days of I know if I’ve done too much lifting because we do, you know, in my job there’s a lot of paperwork and we deal with files and so they can be quite thick. I do tend not to do any lifting if I can avoid it but just simple use of a computer sometimes the mouse, if I’ve done too much then it will hurt. You know it will start paining me but that’s. You know that’s normal but I’d say a 100% better with using the golimumab I’ve got more flexibility. I quite, before I was on that I was really, it was tight. My joint was really tight. Well I can bend.

Ok so it’s more flexibility

Yes and I think that like because of the swelling, the swelling’s gone right the way down. So I
it’s ok so there’s more flexibility and no inflammation.

Yes. Yeah but it’s the inflammation and the flexibility that I’m most pleased with.

And what about your feet?

My feet are ok. See I tend not to wear a tight shoe anyway. I’ve got. See, see the marks on [showing foot] my foot but that swelling has gone down on my feet as well so, around the toes but I don’t get as much pain. Sometimes when I used to be walking for, walk too far then, you know, feet tend to ache. And getting up in the morning I do stuff like, it’s a bit stiff until you get mobile and walk but I’m fine. I’m not as stiff in the morning.

So for how long have you been on the golimumab treatment?

I think, well I can’t remember. It must be I think about April. I think it’s about April/May I might be wrong but I’d say
So about six, five/six months?

Yeah, yeah.

And for how long will you be on it? Do you know?

I think, well I know I’ve got one more injection in the fridge and I spoke to the hospital yesterday and they were hoping that I would probably get another one for November but after that they have written to the, is it the PCT to ask but I think it’s to do with budgets that I might not be able to carry on with it because it has something to do with the scoring of. You know it, I think if you’re a thousand, marked the way they work it but if the more joints which are in agony, you know, that you’re affected by then you’re more likely to stay on it. Well the fact that it’s done me good it doesn’t s

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

I’ve recently just finished taking part in a trial for the use of cannabis for the relief of inflammatory pain in rheumatoid arthritis and it was a most interesting study. I was required to take the drug spraying it under my tongue, which tasted disgusting. No chance of becoming a drug addict, doing this horrible spray, it was the, I presume it was a spin-off from the use of cannabis with MS, and the researcher seemed to feel there is some mileage in it for a rheumatoid, which would be wonderful, if it did help somebody;

You don’t feel any different when you take, but you have a lot of blood screening ECGs, heart you know, weight, very intensive and I think probably from the blood screening they will get some indication then as to whether it actually affected you in that week, unless I ask I don’t think I find out any results but the clinician that looks after me, as far as my rheumatoid, was actually involved in this study so I think if it was appropriate for me to ever take it, although it’s still in a very crude form, presumably he would offer it to me. But I would suspect it’s probably for younger more acutely inflamed patients than me. But I was very happy to do it. It was most interesting.

You said you were happy to do it, you know, were you provided with, did you have to weigh all the pros and cons of doing it?

No. There seemed to be no risks. There was very good care, plenty of contact. You didn’t have to be, ‘cos you couldn’t drive after you’d taken it and you know, you didn’t have to provide any accommodate, transport, they, you know, there were no sort of costs involved, everything was covered if you needed it to be, and as I mentioned having a daughter, I felt it could be very relevant for her, if it was of use in the control of inflammation;

But did you feel any effects from it?

None at all, no. I thought during the week, that one of my grumpier joints, was a little less grumpy, but it’s a transient grumpiness anyhow. It went away but then it came back while I was taking it so, I have a, I didn’t feel that, I didn’t feel any change at all in me, no;

Have you taken part in any other research;

No, I’ve, not in taking a substance. I’ve been just answered questions to another research nurse but that was just part of the clinic, the rheumatology clinic, and then this present research. But no I haven’t been part of anything else.

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.

People are scared by drugs trials or these new drugs on yet nobody knows. it’s not tried and tested, you know, trialed, but it’s only guinea pigs. If you don’t put yourself forward to have a go then how are you going to get results or how are you going to know if it does work.

And I just think when you’re in a situation where you are confronted with pain you will try anything if it means you will, it gets some relief. And I just think, don’t be scared to have a go because the positives outweigh the negatives.