Rheumatoid Arthritis
Finding information about RA
People who had had RA for many years often noted that in recent years information has become much more accessible and that doctors seem more willing to discuss treatments. A few of the older people we talked to happily relied on their doctor for all their information but most wanted to find out about their disease themselves, even if they trusted their doctors completely. In one older woman's words 'If you've lived with something for years you're bound to ask questions about it, otherwise you're a bit wrong mentally'.
Things have changed a lot since her symptoms started in the 1970s - doctors are now less formal...
Things have changed a lot since her symptoms started in the 1970s - doctors are now less formal...
I couldn't quite understand it, I didn't understand half of the questions but then again I think we're far more less formal when we go to doctors and consultants now than we were probably when I was a teenager, you know, I, I don't have any qualms of saying to any of the medics looking after me, whether it be GP or consultant or clinical nurse practitioner, 'This aspect has caused me a problem.' It may well be RA related, it may not be RA related but I don't have a problem with broaching that and then saying, 'Well how will that impact on my arthritis?' You know, so it's, like you're looking at the bigger picture rather than sort of pinpointing bits of it into one area. Yeah, that's important.
Many people had received informative leaflets about RA from the rheumatologist, or picked them up at the GP surgery or Rheumatology clinic. Others read magazines such as Arthritis Today (Arthritus Research UK), Arthritis News (Arthritis Care) and other publications for people with disabilities.
Has used various sources of information but finds the leaflets answer most questions and are easy...
Has used various sources of information but finds the leaflets answer most questions and are easy...
I think you can get, gain an awful lot from the website that's available. And until I think I was told about the website you know, it didn't dawn on me, you know, that there was so much information on there. There's lots of reading material, you know, not only leaflets but books that, you know, that you can purchase or, you know, at the library. So there's an awful lot out there that if you don't ask questions or delve you won't know about. And so that was one of the things that I found most useful after asking the initial question.
Have you read any books?
No. Laughs I know I just mentioned them but I found a lot, all the information that I've gained from the leaflets is answering all the questions that, you know, that if, if I had any queries or problem the leaflets are there to give, because it's such a, you know, it's so informative you don't have to read loads of pages of a book to find out what you're, what you're after. So it's laziness really. Laughs But they are there if you are, you know, got the time and, you know, you're a quick reader.
Linda uses the internet mostly to find about complementary products but the leaflets provided by...
Linda uses the internet mostly to find about complementary products but the leaflets provided by...
Many people had read books about RA, which often detailed dietary or other complementary approaches. Personal experiences of living with RA were also popular. One woman had been pleased to discover a book about Arthritis and Sex and another noted that many second hand bookshops and charity shops had books about RA.
Was pleased to discover books about arthritis including one on physical relationships by Young...
Was pleased to discover books about arthritis including one on physical relationships by Young...
And they've done actually, they've done, it's been quite good cos, Young Arthritis Care did a book on 'Lovemaking and Arthritis for younger people' and that was really good, I found that a really good book, I sent off for that and I really found that a very positive book. I did, where I worked we did research on sexuality and disability and part of my jobs, one of my jobs, which was a great job was I had to ring up all these disabled organisations and ask for all their literature on sex, so I kept getting all this literature in work with my name on it and I bet they all thought what a perv she is you know.
And I had, I, there was a few of us that had to do it, one of us had to read a book on 'Arthritis and Sex' one of us read a book on 'Spina bifida and Sex' and the Arthritis Care Arthritis book came as the top, it was really good, it was done in a positive, informative way and I thought the book was ace, was really really good, and I've also read lots of books on coping with arthritis how other people have coped with it and written books, I've read a book about, I've read that too.
I did read a book about hip replacements but I decided it was too depressing and told me too much and so I didn't bother with that one, so I've read lots of books as well on arthritis, but all of them I read are really how to cope with it, because I want to know what people have said and done and they feel the same way we do.
(Publication available now is' 'Our relationships, our sexuality').
And when you hear other people saying what you're thinking, it makes you feel better, it does, because otherwise you think you're on your own don't you? So I recommend the Arthritis Care book on I forget what it's called now, but it's a really good book, it's really inter, it's a good book if you're able bodied actually! [laughs].
A recently diagnosed young woman, commented that most books on RA tend to come from the USA and therefore information about charities and support groups are irrelevant to a UK-based patient. She has also found that there is a lot of confusing information about diet and exercise.
Finds that magazines and books give confusing advice about lifestyle and RA and prefers to look...
Finds that magazines and books give confusing advice about lifestyle and RA and prefers to look...
And I'm seeing the, they have like a multi-disciplinary meeting in January, which will be good because I'm, read in all sorts of books that you can't to do, you can do this, you can't do the other and there's so much conflicting information I kind of cancelled my gym membership, I was told swimming is something what you should do by these books and then you can't do aerobics. So I can go to aerobics and it does, I do end up hurting quite a bit after but, I just need some more clarity of what I can and can't do so I think that meeting will be really helpful.
These are the American books?
Yeah, yeah.
And there are things that say, oh you can't go skiing and skiing's something that I love to do. I'm sure I can, so it's just, I think that meeting's really going to help.
I don't know, I don't' know, I've got this one book called 'Plan to win' and when I first read it I thought it was really good and the first few chapters are all about what rheumatoid arthritis is, were brilliant and it's exactly the same as everywhere else. If you go on the Internet and you find out, you want to find out what rheumatoid arthritis it's really, really good, it tells you exactly what it is. And that's really clear. But what was unclear was what you can do to help because obviously the first thing you think of, 'OK what can I do to minimise this effect, impact on my life?' And when you start looking at that, that's unclear, so some of them said, kind of avoid vigorous exercise, avoid anything that puts pressure on your joints, avoid team sports like rugby and football, anything like that. And they said swimming was the best thing you can do but then I was speaking, who was I speaking to? It was to a nurse, not in relation to it but just generally I was talking to a nurse and she was saying, 'Oh no, you should be OK to do skiing and things like, skiing and things like that'. So that's what I found difficult. And that's what I said to the consultant, he said, 'Well you need to go to this meeting and that will clear everything up.'
So, who is going to be at that meeting?
It is, I've got the letter with me actually here, so a physiotherapist, an occupational therapist, and someone else, let me have a look. There's three people, it's a three-hour meeting.
It is the practitioner, physiotherapist, occupational therapist.
Some were wary of information and worried about discovering 'scary' things about the disease, but others found it reassuring to learn that new treatments can avert much of the disability people associate with RA.
Wishes she had known more about how newer arthritis treatments can help people to avoid disability.
Wishes she had known more about how newer arthritis treatments can help people to avoid disability.
People, you know, become less disabled or have, you know, much better outcomes than in the past. Because although I didn't know anybody who'd had my particular type of flare up at my particular age you do bump into a lot of older people who have had this condition for years and who've had awful difficulties with it. Which can be a bit off putting and I think well in those days they wouldn't have had these drugs so you know there must be some benefits and I, I wish that had come out a little bit more in the literature.
Because RA involves long-term medication, many wanted to know more about the possible side effects, including how common these are.
It can be difficult for health professionals to judge when to give people information about their illness. Leaflets about aids and adaptations alarmed some people who were at an early stage of the disease when they hoped they would never need them. However, others were amazed that they had not been given invaluable information about voluntary organisations, benefits advice, disabled parking schemes or Access to Work (see 'Financial implications for people with RA and financial support').
Access to the Internet has revolutionised some people's ability to find out about their diagnosis, what the various tests are for, learn about new research, what to expect from surgery, find descriptions of treatments and side effects, complementary and dietary approaches. People also searched for the personal experiences of other RA patients wanting to find out how others have coped with the disease. Many people without access to the Internet had a friend or relative who searched for information on their behalf. Partners looked for information on the Internet to help them understand what their spouses were going through and to enable them to ask doctors questions. One man found information that was particularly helpful after his wife was first diagnosed. Several respondents indicated that in their experience it is better to visit recommended websites rather than just 'Googling' the term 'rheumatoid arthritis' because some of the information on the net can be scary or just too commercial.
Believes you should get as much information as you can.
Believes you should get as much information as you can.
So as soon as my wife was diagnosed with it, I was out there on the Web or trying to get as much information and trying to assimilate as much information about the condition as possible and understand what was going on and what the long-term effects might be. Just so that I was prepared for what was going to be happening or what might happen. So that I could be as aware of what [wife's name], my wife was going through and understanding what she was facing because if I didn't know what she was going through there was no way I was going to be any help to her so, you have to, you have to know that stuff, so. Again, this web-site is a cracking idea for making that information available to other people who are facing similar situations. It's a great resource.
I think since it's been diagnosed, obviously, when it was first diagnosed, and like myself, she was quite worried and quite concerned about what it might mean and what the future might be. But again, having got some information and looked into it, you know and done some research and got some understanding of what it all means I think she's been a bit more positive.
Tara says that 'Googling' for information can give you the worst case scenario. Somehow what she...
Tara says that 'Googling' for information can give you the worst case scenario. Somehow what she...
I suppose the information was what I had learnt from my first time around and that was probably more experience. I didn't get a large amount of information from the hospital I must admit. I sort of sent off for a pamphlet really which is a bit poor really. I did a lot of looking on the internet, and being a nurse, I sort of phoned people.
The Arthritis Research Council they are very good. They have got a lots of pamphlets. Is the NRAS that is another one'
The national...?
Rheumatoid Arthritis Society. They were good. And I Googled. The first time I Googled which was really stupid because it is not a very, good cross section that you actually come across on Google. You seem to get the worst case scenario for everything. Which I understand now, you know.
I remember the first time I Googled rheumatoid and came up with oh within five years 60% of people are disabled or not working any more and I was just ridiculous statistic really.
But it is funny, when you are in sort of a negative way, because when you are in pain, that is what I found one of the most interesting things about this. When I am in pain I am a different person. Everything is very negative. You can't look at the positive on anything. Everything is a problem. You don't have a very positive optimistic outlook at all.
So if you find a piece of information about rheumatoid, you are told you are looking for the worst case scenario rather than looking for the optimistic side. It is strange.
Newly diagnosed people can benefit greatly from one-to-one information from health professionals. One recently diagnosed woman found that her meeting at the hospital with a multidisciplinary team consisting of a practitioner, an occupational therapist and a physiotherapist was much more valuable to her (and less depressing) than searching the web for information.
A meeting with a multidisciplinary team at the hospital was much more helpful to her than looking...
A meeting with a multidisciplinary team at the hospital was much more helpful to her than looking...
In the beginning, my first couple of appointments, I didn't actually receive anything at all apart from just an information sheet on the drugs and just an information sheet and a couple of website addresses, DIPEx was one of them, just to go an research myself. And probably the research I did was more damaging than anything else. I probably saw a lot more of the negative side of it than, than any positive side of it.
But on my third appointment, the nurse I was seeing at the hospital, [laughs] said, 'How about you come up to [hospital] and we can have an hour or two with you going through, you see a physiotherapist, you see an occupational therapist, you see, you know, different people in different roles who can explain how you can cope with things better, what you can do to help yourself, what exercises you can do.'
And I went up there to do that and, and that was very, very helpful. Really, really helpful. At the time, I was suffering from problems with my wrists as well, carpel tunnel syndrome.
And since, beginning of last year, beginning of 2007, I had an operation on both of my wrists and that's, kind of, helped that, but originally, they were helping me with that as well. And they referred me to a company that dealt with, sort of, disabled people and, and tools and, and things that could help, which was very, very helpful, at the time.
Yeah.
So, you know, I felt I actually got something out of that appointment, but it was only just mentioned in conversation that they could see me at [hospital], and and spend this time with me, but I think it was probably the best thing that happened really.
Doctors and other professionals can help guide people to reliable sources of information, voluntary organisations and good websites. Although some people said that their doctors had warned them off the Internet, others had doctors who would help them to interpret what they found. However, it wasn't always easy to raise questions in busy clinics, nor to know who to ask if the doctor seemed too busy. Some people felt they had slipped through the net and not been given the information they needed. One woman described finding important information on the Internet about how she should take her methotrexate and others had searched for useful information about their surgery.
Found important information on the internet about how to take her methotrexate.
Found important information on the internet about how to take her methotrexate.
So to start with I wasn't taking it with food and when I got the information from the Internet it said take it with food. Which I think is quite important because obviously, you know, there's always the possibility of stomach ulcers and things like that if, you know, it does irritate the stomach if not taken properly. So I hadn't been aware of that.
I hadn't also been aware that to take folic acid with it can, is useful and can stop just minor symptoms like mouth ulcers, that was on the leaflet and when I suggested that to my local GP he said 'Yes, that would be useful'. And it mentioned other things like it's quite useful to have a flu vaccine. Again, which I, I only had from that sheet, so that I felt there was quite significant information. Also how the drug itself worked that it, that it, I think it kills off certain white cells, in your body so it, to sort of suppress the immune system to a certain extent. So it was useful to know what the drug was and how it was working yes.
Used the internet to find out what was going to happen before fusion surgery, and also buys...
Used the internet to find out what was going to happen before fusion surgery, and also buys...
I looked up all the procedure on the internet and I had a look for joint replacements as well, because I wondered why they hadn't offered me a joint replacement, which is what they can do for ankles and shoulders and hips and things like that. And found out it, that your ankle and foot have so many, I think it's twenty seven bones in there, and it's so complicated and there was one in the states that sort of worked, sort of like that, but no one had actually used it over in the UK at all and it would be sort of groundbreaking to actually try.
So they went for fusion, so I looked that up and I knew everything they were going to do before I had the operation. I mean I'd actually seen pictures and x-rays of people who'd had, had it done, so I knew exactly what was going to happen. I didn't know how I was going to be able to walk when I'd finished with it you know, but it's been a great success really, he's done it really well.
I started off by sort of doing searches on the internet for rheumatoid arthritis and alternative medicines and got a list of various things like glucosamine crondite and cod liver oil, evening primrose oil, all the sort of things like that, coral sulphates things like this, and I suppose, I still take them, I buy them wholesale from off the net now whether they're doing me any good or not I'm not quite sure but they don't me any harm and I don't know what would happen if I stopped taking them so.
And eventually I, I did see a herbalist properly, a proper qualified one, and I've been going to her for about a year and a half, and she, she basically makes up the medicines herself, but I know there's a lot of anti-inflammatory type herbs that are in the mixtures that she makes up and I've been taking that regularly for a year and a half now.
The Internet can provide enormous, sometimes overwhelming, amounts of information. Useful websites people mentioned included Arthritis Care, Arthritis Research UK, The National Rheumatoid Arthritis Society.
Charity websites often provide ‘chat rooms’ where people with RA can communicate online with other patients in an anonymous way. People who have used charity run chat rooms found them a useful way to shared information but also to learn from the personal experience of others.
Sandra finds the exchange of information and little tips' though the chat room useful and...
Sandra finds the exchange of information and little tips' though the chat room useful and...
Emma finds the internet useful and accessible but the most important thing was to know that she...
Emma finds the internet useful and accessible but the most important thing was to know that she...
However, some said that many of the medical charity sites were rather dry and wordy or contained nothing that they hadn't already seen in leaflets or books. Some people searched sites like the British Medical Journal to find the latest published medical research. One woman had used the Internet to 'flesh out the headlines' after reading newspaper reports of so-called 'miracle cures' (see also section on 'Resources'). Sometimes people doubted the reliability of information they found, especially if it was from American websites that were trying to sell unconventional remedies.
Uses the internet to check out media stories about 'miracle cures' for arthritis.
Uses the internet to check out media stories about 'miracle cures' for arthritis.
So, but I, you know, I think it's useful because you know, it just gives you another insight into how the disease can be treated and how, how effective some people have found it. I mean, there are people who've, who've managed it using alternative medicines. I mean, I don't, don't think that would be suitable for me but I'm, I'm not saying that it wouldn't work. You know, I just feel more comfortable with being treated the way I am, you know. So I would read it and, and, and listen to other people who say 'But I find it works' but I probably, you know, wouldn't want to, to go that way myself.
Younger people indicated that there is still need for more information that is relevant for their age group. Some of the issues that young people find hard to find information about are' traveling abroad, living abroad and healthcare for disabled citizens in the European Union. Several young adults said that a lot of the information in the media is targeted to older people with RA which reinforces the 'myth' that RA is an illness that only affects old people. (See also our young people's experiences of long-term health conditions).
Tara says that young adults with RA have different information needs to those of older people...
Tara says that young adults with RA have different information needs to those of older people...
And I do think that there needs to be more emphasis on for the younger people because it really knocks you when you suddenly get this arthritis. I am 30. What on earth have I got arthritis for. It does knock your confidence in who you think you are, your sensibility I think, because you think you are old. And when you do have a flare you do feel like you are old but'
And your information needs are different also?
It is very different. And I am not, no way I am dismissing what it must be like to be old and have rheumatoid because it just must be twice as bad, because you know, you are old. But it is and it is different needs, and also that, I was young, I wanted another child, was that going to be possible? You know, all the things that you might not think about at the time, but later on you think oh I wish I had asked them that, I wished I had asked them that. But I have learnt a lot from that, I write a lot of things down when I go to see them at the hospital, because you forget. So yes, I think it is different, very different needs aren't there, from say someone who is 60 to someone who is 30. No one's needs is greater. It is just different isn't it? You know.
Their consultants had suggested one of the new biological drugs to some people we interviewed. Those who wanted to know more about them found the manufacturers' websites useful.
E-mail was used to keep in touch with friends and family and to make contact with other people with the disease. One woman liked being able to e-mail her GP's surgery to arrange repeat prescriptions. Another had bought aids and gadgets to make life with RA easier. The Internet is also used for support and to learn about other people's experiences, but some regretted the need to visit so many different sites to find everything they wanted to know. One woman had used a patient health community website to reach other people around the world with RA. Another had been encouraged to take part in this research project because the Internet had made her realise that she was not alone in her experiences of RA. Two men had attended an Arthritis Care course, Challenging Arthritis, which had introduced them to other people with RA (see also 'Sources of support').
Her GP practice allows patients to contact the doctors and order repeat prescriptions on-line.
Her GP practice allows patients to contact the doctors and order repeat prescriptions on-line.
Can you, apart from prescriptions I mean can you e-mail them sort of questions and stuff?
Yeah you can do all sorts on it yes, it's quite good, they've only just recently set it up, it's not been going very long, but yeah there's all sorts of different things on it, that you can contact them and if they need to know anything they'll phone you back or whatever, or they'll send you an email or you can do all sorts through it yes, its quite good.
How quickly do they respond?
It's usually the same day, but I've never actually had to do an awful lot to contact them like that, they have had slip-ups with the prescription wise, you've ordered it on there and its come up saying your prescription will be ready in 48 hours or whatever, and you've gone down and it's not been there. But they're pretty good at sorting it out afterwards it's only a couple of hiccups. It's pretty good, yeah they're doing well with it.
It doesn't clog the lines you see for getting through, you know ordering repeat prescriptions and things like that, it clogs the telephone lines and the receptionist is on that all the time, they've got a special line now also and the ones for, that can go on the internet you can order it through there, it doesn't clog the normal telephone line up, it's quite good it works.
Uses the internet to buy aids, including a power socket remote control, and other items related...
Uses the internet to buy aids, including a power socket remote control, and other items related...
I don't know there are loads of, I've found loads and loads of web sites that sell aids and it, I mean it's a, it's a good place to look for things like that because you, you know, there aren't a lot of aids shops if you like, you know, if you can't or don't want to get them through the social services. And you haven't got to struggle out and whatever, you can just sit in the comfort of your home or the library if you don't have access in your own home. And see what's available. You know, there might be something that you had difficulty with and it wouldn't have occurred to you, you could find help with.
And the great thing I've found is not strictly speaking a disabled aid but with the warm weather and not just in the warm weather but in the, in the coolish weather I use my, my desktop fan. And obviously if I, if you're immobile it's difficult turning it on and off so I was looking around one day and found this thing where you can plug the fan into an adapter and use a remote control with it to switch it on and off which was only about '20 and was just worth every penny 'cos it, it's something so simple and incredibly boring as that can really, you know, make things a lot better for you, you know, especially in this kind of warm weather. Rather than having to, you know, either struggle, or if you can't do it at all you have to ask somebody else to keep running up and downstairs or in and out of rooms to, to help you all the time. As much you can do yourself the better I think.
She doesn't visits the RA websites as much as she used to but has made good friends, in...
She doesn't visits the RA websites as much as she used to but has made good friends, in...
I've been on websites to do with rheumatoid arthritis in the past and I have made friends on some of those. I don't actually go on line as much as I used to, anyway. At first, you want to know everything about everything when you're first diagnosed, I suppose. And as it goes on you, sort of, I've kept in touch with one of them and she lives at [place name]. And, we've not actually met, personally, we've spoken to each other on line and on the telephone, as well, and we're very close although we've never met. But she's brilliant. She's all full of beans, always full of beans, even though she's in a lot of pain herself.
But I think that's the only really, she was the only, really one, I suppose, that I cliqued with. You sort of clique with some people, you don't with others, do you?
But it was only one particular website that I went on. I did try others but they were all, sort of, cliquey, you get groups that are a bit cliquey and they.
Yeah.
They don't let people in but she was brilliant. She actually started using the website after I did so she, you sort of, I started talking to her because you do with other people with, sort of, the same problems, you all, sort of, sit down and it's like getting everybody into a room I suppose.
And sitting them down and talking to each other but you do it via the computer.
And why do you think you clique with her?
I don't know, I think we've both got the same sense of humour, actually, [laughs] I've got quite a wicked sense of humour when I get going. No, but she's, she's always laughing.
Has she got, is she married, has she got children?
She's married but her children have left home now, recently. So… But, she's not as, she's not got to the stage I'm at, thankfully, for her, she isn't.
But she does have her other problems herself so it's, sort of, six of one, half a dozen on the other but [sniffs] I don't go, as I said, I don't go on line as often as I did now but we used, I got a Christmas card from her, asking me how I was, and I sent her one back. And then she e-mailed me or rang me, so, if I'm, I mean, at one stage I was always on line in the evening, after [son] had gone to bed at night.
But I used to talk to my friends but as I've, sort of, got worse and worse.
You just haven't got the energy. You don't want to be sitting at a computer desk. But she's been really good, she really has. I do have other friends, and they are good. When I'm really bad, they, they do come and make sure my husband's okay and son's okay. Not that they're not capable, because they are, but they come over and make sure I'm all right as well.
Last reviewed August 2016.
Last updated August 2016.
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