Rheumatoid Arthritis
Choosing treatments for rheumatoid arthritis & taking part in trials
It is not unusual for people diagnosed with RA to try different treatments in order to find the right one that will help control the condition, alleviate symptoms and also minimise some of the side effects of the drugs. It can take some time finding the drug treatment that works for you. Also, when making treatment decisions doctors need to consider patients' views, knowledge, circumstances, hopes and fears. Future plans for a pregnancy are important, for example, because some drugs can affect the ability to conceive and may affect the baby (see 'Pregnancy and breastfeeding with RA').
Some treatments are only appropriate at certain stages of the illness. One woman had been told that a cortisone drip would not be appropriate for her because her illness had 'burnt itself out'. Some people decided that the symptom relief from joint injections did not outweigh the pain of the injection. For others the short-term benefits of steroid pulses/injections were not enough to have them.
Some people we talked to had great faith in their doctors. They assumed that the rheumatologist knew what was best for them, and they didn't want to get involved in shared decision making. Although clinicians may be experts in their area, several people particularly young adults, felt that they were experts themselves in RA having lived with it for many years and they were frustrated when people didn't listen to them.
Has complete faith in her doctors and has never felt a need to get involved in treatment decisions.
Has complete faith in her doctors and has never felt a need to get involved in treatment decisions.
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Emma's treatment wasn't working and her consultant suggested an anti-TNF drug; Cimzia. Emma...
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Emma's treatment wasn't working and her consultant suggested an anti-TNF drug; Cimzia. Emma...
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What was the name of the medication you were put on?
It was Salazopyrin (generic name' Sulfasalazine), single agent with some painkillers on the side.
Ok and how do you take those?
It was on increments. So I would take a certain dose for one or two weeks and then increase that dose and so on until I was at the level he needed me to be on. Side effects' really bad sickness, nauseated the whole time that I was on it. Lost quite a lot of weight. And because of my age and being a girl there’s implications for taking anti-sickness tablets so I was told by my GP. So it was kind of a grin-and-bear it sort of medication and I was still suffering the pain with that. And so when I went back to see a specialist nurse locally at the NHS hospital they introduced methotrexate and Hydroxychloroquine as a treatment dose – a combination therapy.
So you were on three at that point?
I started on Salazopyrin. When that didn’t work I went onto Hydroxychloroquine, Salazopyrin and Methotrexate with Naproxen on the side as a painkiller.
For how long were you on this second medication?
[sigh] About a year and a half.
And how did you feel during that time?
Again nauseated because of the methotrexate. Quite a few coughs and colds over the time because obviously I’m slightly immune-suppressed. And it’s a lot of tablets to be taking at my age and it’s a lot. You know, it’s all the time. If you forget you certainly know about it. Your joints are painful the following day.
The, the pain was on a regular basis. It was every day. Flare ups were not very often but considering the level of the pain I had every day it was, it was. I never had a good day if that makes any sense at all. Obviously some days were worse. Some days were slightly better but it was quite a high pain I felt every day especially on waking up. That was the worst.
And you were taking painkillers every day?
Yup.
So how did they explain Cimzia to you?
I went for my first ever appointment and I had X-rays, ultrasounds, examinations on my first appointment there. Considering how long I’d been on the combination therapy including methotrexate the ball was sort of put into motion. I was explained it was a very new drug. Not many people had been offered it and it might prove slightly difficult for me to get it because it was in the trial, only trialed on sort of upper body joints and it wasn’t licensed for toes or feet at the time. So my consultant wrote a letter to the company explaining my situation, explaining my age and how I’d been on, you know, I’d given it a fair run with the combination therapy and nothing had seemed to work at present. And there was a bit of, it took quite a long time. They first came back and said, ‘no, they weren’t happy’. So he wrote again and again and again and eventually they, they authorised it and my local primary care trust (PCT) were happy to fund it. So I think that was the main problem because as it was I wasn’t in that local PCT so it was my PCT that had to fund the whole process of it. So…
There was a specialist nurse who dealt with Cimzia especially and she had a massive welcome pack to it. And it had the drug introduction, how it was used, had what I could expect from it. I mean the side effects from it were pages and pages of it. So she did go through it with me very accurately. I mean the
Some people, however, were aware of uncertainty in medicine and wanted to take an active role in planning their own treatment. They chose to ask questions and find out as much as possible (see 'Finding information about RA'). One woman, for example, said that since different health professionals gave her different answers to the same question it was important to weigh them up.
Likes to find out information herself about new treatments suggested by the doctor.
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Likes to find out information herself about new treatments suggested by the doctor.
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Asserts that patients should take an active role in making treatment decisions.
Asserts that patients should take an active role in making treatment decisions.
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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.
Some people chose to stop taking certain medication with or without agreement from their doctor. Several were unhappy to persevere, as advised, with medication that caused unpleasant side effects.
Was not happy with some of the treatments and chose to stop taking anti-inflammatory medication.
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Was not happy with some of the treatments and chose to stop taking anti-inflammatory medication.
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Do you feel that you've had any choice in the treatments you've had?
No, no, I don't think there was any choice. In the, well, let's go back to right to the beginning, I wish I hadn't had the injections and the other things that the physio and the sort of medication I had at that time, because it was of no use to me at all. And it was also suggested that I took Ibrufen night time and through the day and I wasn't very happy with this either because, I think all you do with the Ibrufen is to shield the problem and I'm a firm believer if you've got a pain well, get rid of it, don't just cover it up with drug or something like that, especially when you get side effects.
So, yeah, I got rid of the Ibrufen. This was voluntarily done actually, I simply said I don't want anymore on repeat prescriptions. And it wasn't until I saw the consultant that, I don't know whether he was fortunate or not, but he did prescribe, as far as I'm concerned, the drug which was most suitable for my body. And again I do realise that certain body functions and if something can be prescribed to assist those functions to work properly, that's the way to do it.
Had side effects from taking methotrexate and wanted to stop taking it, but her consultant was...
Had side effects from taking methotrexate and wanted to stop taking it, but her consultant was...
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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.
Some people were critical of consultations they had had in the past with their doctors. They hadn't been offered a choice of treatment and would have liked to have known more about the side effects of various drugs. Others thought that no alternative treatment options existed.
Most people, however, spoke highly of more recent consultations. Their rheumatologists had discussed the risks and benefits of different treatments. One woman suggested that today it is almost seen as a patient's duty to ask questions and get involved in treatment decisions.
The treatment options were all explained. She was given information and an opportunity to talk to...
The treatment options were all explained. She was given information and an opportunity to talk to...
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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.
A woman who had been treated privately said that her consultant always suggested treatments that would fit in with her lifestyle. A man who liked to drink whisky most days had been offered sulfasalazine instead of methotrexate (see 'Disease Modifying Anti-Rheumatic Drugs (DMARDs).
One woman had waited three to six months to see her consultant at the hospital but was 'fobbed off' with a registrar. She felt upset because she wanted to discuss her medication with her consultant. She wrote to him about her concerns and saw him soon afterwards.
Choice about whether to have an operation was also important (see 'Surgery for RA - introduction'). One woman, having private treatment, chose surgeons recommended to her who were specialists in a particular joint. Others had tried strengthening exercises before making a decision and this had sometimes prevented the need for surgery.
Having private treatment she could choose surgeons who were skilled with a particular joint.
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Having private treatment she could choose surgeons who were skilled with a particular joint.
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Successfully chose to do strengthening exercises instead of having joint surgery.
Successfully chose to do strengthening exercises instead of having joint surgery.
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Participating in clinical trials
Some of the people we talked to had been invited to take part in clinical trials of various drugs, and while most of them accepted, others refused for several reasons which include being too ill, doubting the benefits of the new drugs, being 'wary' of new 'untested' drugs and disliking the idea of being used as a 'guinea pig'. Moreover, one woman was doing well on her current medication and saw no need to take part. The reason for another woman to decline taking part was that she was already being monitored as part of a trial of a new type of hip replacement.
Those who accepted the invitation, were pleased to take part in clinical trials especially if the new drugs might help them and others too. One woman said that she was happy to take part because she had got to the stage where there was 'nothing else' to try. Pearl volunteered to take part in clinical trials but had to wait for a long time before being invited to take part in a trial of golimumab (commercial name Simponi).
Pearl explains how her participation in a clinical trial for Simponi (golimumab) came about.
Pearl explains how her participation in a clinical trial for Simponi (golimumab) came about.
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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.
One young woman had taken part in a trial of adalimumab (commercial name Humira). Her consultant had told her about the possible long-term risks to health but she was keen to take part in the trial because she wanted to find something that would relieve her symptoms.
Describes her involvement in a clinical trial.
Describes her involvement in a clinical trial.
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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.
Two people had taken part in a trial of infliximab anti-TNF medication. One man felt no beneficial or harmful effects and thought he had been on the placebo for a year. One woman did it because her 'disease was out of control' and found it very helpful. She was upset at the end of the trial because no one would pay for her to continue taking the drugs. After a battle of six months the drug company agreed to give her the drug on a 'compassionate basis' (see 'Biologic treatments for RA').
Three women who took part in a trial of Simponi have had different outcomes regarding their responses to treatment and experiences of funding bodies. Pearl and Linda responded very well to this biological therapy but for Pat’s this treatment failed. Moreover, Pearl continued on anti-TNF therapy straight after the clinical trial finished and funding for her treatment was never an issue. In Linda’s case, however, there was uncertainty as to whether her funding body would fund her anti-TNF therapy beyond the trial period.
After the clinical trial finished, Pearl started receiving regular deliveries of her anti-TNF...
After the clinical trial finished, Pearl started receiving regular deliveries of her anti-TNF...
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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.
Linda talks about how she felt before she started on Simponi and how successful it has been in...
Linda talks about how she felt before she started on Simponi and how successful it has been in...
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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
Pat felt well when on Simponi but test's results showed that it hadn't made any difference to her...
Pat felt well when on Simponi but test's results showed that it hadn't made any difference to her...
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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
People described the 'special treatment' they received in clinical trials. Four wome who took part in a trials emphasised the very good care recieved and plenty of contact with health professionals.
Took part in a clinical trial of cannabis for inflammatory pain.
Took part in a clinical trial of cannabis for inflammatory pain.
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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.
Contrast the care she got from the clinical trials' team and her regular rheumatology team. She...
Contrast the care she got from the clinical trials' team and her regular rheumatology team. She...
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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.
Linda encourages other patients to volunteer to take part in clinical trials.
Linda encourages other patients to volunteer to take part in clinical trials.
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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’.
Last reviewed August 2016.
Last updated August 2016.
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