Ideas about the causes of rheumatoid arthritis

We dont know what causes rheumatoid arthritis (RA) or why it affects some people but not others. It seems that complex interactions between biological and environmental factors are involved. It is probable that some of the genes that play a part in the immune system are linked to this condition. However, researchers think that something must trigger the disease in those who have a genetic susceptibility to RA. Triggers are considered to include stress, hormonal change or a form of infection.

People had lots of different ideas about what might cause rheumatoid arthritis, but many said they did not think there was an accepted cause. The role of family history, or genetics, was the source of the greatest disagreement. Some insisted that there was a connection – a belief encouraged by the number of times clinicians had asked them whether relatives had the disease, but others had read or been told that family history has no effect.

Has often been asked about her family history and would like to know, from a trusted source,…

Age at interview 37

Gender Female

Age at diagnosis 27

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There is one thing that I’ve never ever really been told by a consultant which I should find out, is I, it’s something I’ve not wanted to find ask because when I first had this they asked me if any of my family had it and I assumed from that this is hereditary. I bumped into a gentleman a couple of months ago who used to do research and actually worked on some of the treatments that was the second line treatments, but has now retired and he answered it for me and said it is not a hereditary thing. It is not something that I will pass down to my children because I have a fear of passing it to my children but I still would like that answered by someone whos in there now. That’s still in that research side to find out really if that is true. That’s another one, another question I would like answered.

And have you tried looking up on the web?

No, I think it’s one of those, one of those things that that’s the one I’m avoiding because I do not want to be told that my kids could get it. I want to know, but I want to be told by someone who is really, knows what they are talking about. Not that I am going to read it and it that it’s going to be wrong. But the fact that I want it to be from a, you know, someone who really knows what they are talking about. Because I want that one answer and only want it answered once. It’s a bit scary.

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Some people were surprised to have been diagnosed because they did not think they had it in the family, but sometimes enquiries suggested that there were relatives with RA. A woman who was aware of auto-immune disease in her family doubted research suggesting there was no hereditary link. Others suggested a possible connection between different diseases such as MS, cancer, asthma or other auto-immune diseases.

Suspects that a genetic link even though she believes research has not been able to show this yet.

Age at interview 49

Gender Female

Age at diagnosis 36

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My mother’s got arthritis cos I’m from the [name of island], it all the inbreeding. In fact there’s quite a lot, you know, it goes back in the family. My grandfather had ankylosing spondilitis and his wife had, my grandmother, scleroderma, which is another autoimmune disease of the same kind of groups and no wonder really. But yeah, so it’s in the family going back generations probably.

Well apart from the fact that it’s in the fam, I mean autoimmune diseases seem to be in the family, no. I mean it’s just one of tho, no, nobody knows particularly what causes it. The latest thing was meant to be some kind of reaction to a virus. That’s what people think, but then there was a big article in the, was it The Lancet or somewhere, saying it wasn’t genetic. But depends what you mean by genetic. But I think, I mean, people do tend, there does tend to be quite a strong family history to the various people.

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The damp British climate was often mentioned as a possible cause. One person said that RA is now the British disease and another commented that it does not seem to be very common in countries such as Japan and China, suggesting that climate, diet or some cultural factors might be important.

Several people believed that a combination of factors cause RA – for example there might be a genetic predisposition but it would take some sort of trigger for the disease to appear. Triggers were sometimes thought to be a virus, trauma, multiple vaccinations or heavy manual work or a shock such as bereavement. Another person was convinced that her RA was brought on by a dreadful combination of bereavement and shock.

Believes that a combination of genetics, flu and the shock of a bereavement contributed to cause…

Age at interview 49

Gender Female

Age at diagnosis 33

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Ah, why I think I got rheumatoid arthritis is well it’s a two-fold thing I think. Probably why I think, I mean it’s obviously sort of a genetic inheritance I have. But my brother died three years before I actually had rheumatoid arthritis so I think for the very first time I was probably, I’m extremely, I think, and still am, sort of very positive in the way I think. I think, for the very first time my thoughts were perhaps slightly negative, you know, having sort of experienced something like that. He was young, it was an accident.

And I think that probably was not in my favor, I was a young mum, very busy mum and I had a very, extremely bad bout of flu or something whatever it was. So I think it was factors at that moment of time which all compounded to me having rheumatoid arthritis. So I think, you know, I think each of those things in turn maybe played a part. So I’ll kill my Mum really. No, honestly, I’m, you know, don’t, I don’t mean that really. Genetics. So my children have it.

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People who thought that there might be a gene in their family that linked to RA often voiced concern about their children or younger relatives. One woman had warned her daughters to be aware of the symptoms so that they could get early treatment and avoid joint damage.

People often suggest that stress has caused illness, although there is little evidence that it does. Sometimes the illness had appeared during exhaustion or over- exertion, for example one person had just taken part in some gruelling training. Two women thought that RA might be caused by a hormone imbalance.

Some people were dismayed that so little is known about the causes or suggested that if we knew what caused RA wed be further along with finding a cure. Many said they were willing to share their ideas about causes with doctors and researchers and suggested that it would be useful for patients to let doctors know their theories about what might have caused their disease so that they could look for patterns and know what to investigate in future research. One pointed out that they could easily help research by filling in questionnaires while sitting around waiting for clinic appointments.

Is frustrated that so little is known about the causes of common diseases, and reflects that RA…

Age at interview 78

Gender Female

Age at diagnosis 32

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I mean, I don’t expect to see on the television news every month ‘scientist have discovered a new drug for arthritis’, but it does still pinch a bit when men go up to the moon and walk on the moon but they can’t cure the common cold. You know, why? You need all the physics and maths and everything to get to the moon, why can’t you do that into a medicine? As my husband used to say, ‘Because that’s chemical, going to the moon is physical.

But I still feel that it’s regarded as the, I mean pneumonia used to be the British disease but I think now arthritis is. All the people that I’ve met and spoken to abroad and people, I mean we’ve had friends from Burma, from Thailand, from India come and stay here and they all say ‘It’s the English disease. You very seldom find an Indian, a Burmese, a Chinese or a Pakistani with rheumatoid arthritis.

Now why don’t you? I’ve come to the conclusion because they are born and brought up in a hot climate. Hot to us, normal to them so their immune system is already adjusted to that sort of thing. But I think with us we have too much of a climate. You know, I mean we’ve been lucky this year, we’ve had a good summer. Heaven knows when we’ll have another good summer. It’s not a thing you can take for granted. We might have a very bad winter. I mean even where my eldest son lives in the Middle East, their winters are like our autumns in climatic conditions. Their summer is very intense heat but it’s only for about 6 weeks.

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Few people thought anything could be done to prevent RA and, unlike other diseases, it wasnt widely believed to be linked to a preventable cause such as smoking or a poor diet. One man concluded that whatever the cause you just have to contend with it as best you can and a woman mentioned her reluctance to pursue ideas about causes too far in case it turned out that something she enjoyed doing was responsible. Another said that even though she was tempted to ask why me? she didnt want to blame her parents or God for her disease.

There are many possible causes but if you have it you just have to cope as best as you can.

Age at interview 76

Gender Male

Age at diagnosis 74

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But theres a number of ways, you can keep conjecturing about why it came about. You, they’re all sort of old wives tales and things like that. Now they do say that it can be caused by a virus. I remember I went to a party, a farewell party, there was a lot of people and after that, that week, the following weekend, I had, I felt ill and then in the following week I had it, it started so I could argue, I caught a virus up there but it all in the wind isn’t now, it all history;

But it all happens for various sorts of reasons doesn’t it. People, as I say, some people get it gradually. Other people it’s a sharp sort of shock effect. So what can you say? It can be your diet. It can be you, it can be in your genes. I don’t think it’s inherit, it’s hereditary. You can’t inherit it I don’t think the general pundits say, you know. But it’s happened and that’s all you can do. You can contend, you’ve got to contend with it as best you can, with the aids that are available.

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Prefers to accept that the illness has just happened by chance; does not want to blame her parents.

Age at interview 21

Gender Female

Age at diagnosis 12

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I just cry for a little bit and then you think to yourself, you know, ‘This is really unfair. I don’t understand why it’s happened to me. But then I think everybody feels like that at some time in their life. Everybody has that something that happens to them and you question why. And unfortunately, it’s not very nice to say it, but that’s just one of those things in life, it’s you can’t always justify things.

I like, I do like the way that people can be religious and say that it happened for this reason, it happened for that reason but I look at it more clinically than that, probably because of my arthritis and because I’m involved in science more than I am in religion with the doctors and everything. Unfortunately there’s no explanation for these things. Sometimes people just get illnesses and there’s nothing you can do about it but it does help to have a good cry although it can’t go on for too long. I always feel that the crying’s fine but it’s the thinking and the, the emotional side that can, can drag a little bit. So I tend to just try keep, quite localised and yeah, I do have a bit of cry and sometimes I don’t even know why so you kind of make up a reason [laughs] and you cry about that.

I would really want to know where it came from, what started it in me, because nobody’s ever told me that. I don’t know if they don’t know or if they haven’t bothered to find out. That’s what I’d like to know. Not, not because I, so I, not so I could blame anything on anyone. I think it’s very easy to blame it on an accident or some, or one of your parents for giving you a bad gene. Blame is one of those things a natural reaction to something. But I wouldn’t feel that, I would like to know scientifically what it is about me that means that I have it because I’ve always been interested in science so it goes along with my technology thing. I like that kind of thing. I’d like to know what it is in me that sparked it off. Just out of curiosity I suppose.

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Last reviewed August 2016.

Last updated March 2012.