People spent a lot of time looking for information when they were first diagnosed, but later tended to look only occasionally or if they had another attack. Information about the causes of gout and how to prevent attacks was particularly important. Some people wanted to know more about medications and possible side effects, and many looked for information about diet. Most people would like more research to be done about gout, and more information specifically about women and gout.
Some people wanted as much information as possible, while others preferred not to know too much. Jill thought that too much information could be overwhelming and it was best to know just the basics. Several people were pleased with the amount of information that their doctors gave them about gout. Sometimes GPs explained the causes of gout and treatment options, but other GPs did not. A few people were given booklets or print-outs of information. Others did not feel that their GP had given them enough information.
Michael sometimes felt he knew more about gout than his doctor. He thought less information was given about gout because it is not life-threatening.
Michael sometimes felt he knew more about gout than his doctor. He thought less information was given about gout because it is not life-threatening.
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I don't think the doctors, my doctor here has been particularly helpful because I don’t think they - as I, as we said earlier, it's not life threatening. I'm not a critically ill patient. I suffer from gout occasionally. Get on with it, you know. I've been prescribed allopurinol. It's up to me if I take it or not, you know. They've done the best they can to that, that extent. And I think I actually know more about gout than some of the doctors there.
And is there any information that you'd like now but you still don't have?
I think on the, on the gout websites, they're helpful, you know, and they're good, they are a good support mechanism for people who use them. It's good - they're a good - it's good to be able to read about it and just see other people's experiences. And I think on the NHS website they've got little video clips of people talking about gout or different ailments. I think they're very helpful because it's very - it's a story, isn't it. People can relate to it more and other people can, you know, just understand it more if it's coming from the horse's mouth.
A few people wished they’d had more information earlier about treating gout. Many would have liked more information about diet from their GP. Eric felt that he was given less information by his doctor about gout than for other health conditions. Several people thought that leaflets about gout in GP surgeries would be useful.
Some people were given different advice from different doctors about what medications they should take or how they should take them. Tony was given different advice by two GPs about when it was best to start taking allopurinol.
If an attack happens when someone is already taking allopurinol, they should continue taking it during and after the attack, but Arthur was given conflicting advice about what to do in this situation.
Arthur stopped taking allopurinol because he was expecting it to stop his attacks quickly. He recently found out that it can take some time before attacks stop.
Arthur stopped taking allopurinol because he was expecting it to stop his attacks quickly. He recently found out that it can take some time before attacks stop.
Age at interview: 63
Sex: Male
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I was put on this course of allopurinol, I can’t even remember what the size of the dosage was, but it didn’t seem to resolve the problem. I still got attacks of gout and I said to myself, “What is the point?”, because I’m not particularly good at taking tablets and I said, “What is the point of taking tablets if it’s not curing the problem?”, because it doesn’t cure it, but nobody in the medical world sat me down and said, right Arthur, this is what allopurinol will do for you, or won’t do for you. You’re sort of left in limbo to find out yourself. Now it wasn’t again until recently… so all these years I haven’t taken it, I’ve tried to manage my gout attacks without actually taking any medication apart from when I’ve got an attack and I take a tablet for the inflammation to get that down…
I’ve since found out that in actual fact some doctors said when you take the allopurinol it will bring on an attack of gout. Okay, the advice I then had was conflicting because some doctors then said, “Right, when you have an attack of gout, stop taking the allopurinol, take the anti-inflammatory, get it back under control, go back onto the allopurinol”. Now other doctors have said, “No, keep taking the allopurinol, take the anti-inflammatory and keep going” so there was a conflict. So you think to yourself, what do I do? What do I do? So I made the decision that I’d stop taking the allopurinol and, as I say, I did some research just before I contacted you, and I read that the allopurinol or the drug, whatever allopurinol is, actually takes about 12 months to build up and be effective, so you’ve got something like a 12 month running period before it will actually show any results. Now nobody has ever said that to me, no doctor, nobody said, “Look, this is a long term solution, you got to stick with it”. So of course through lack of advice, I’m trying to sort of do, not do my own medication but sort it out myself.
Many people used the internet to find information. Some said it was difficult to find information before the internet was available and others asked friends to look on the internet for them. It was difficult for some people to know what information they could trust, particularly when many products were being advertised as herbal remedies for gout. Eddie’s doctor warned him to be careful about ordering any tablets or remedies for gout on the internet.
Some people found the internet useful for finding out how typical their experiences were. They appreciated knowing that they were not alone in having gout. Several were surprised to discover how common gout is.
Ivor was surprised to find that gout was more common than he thought.
Ivor was surprised to find that gout was more common than he thought.
Age at interview: 69
Sex: Male
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It was just surprising the number of people who also commented that they’d suffered from it. It was a bit of a revelation because I didn't - I just assumed that it was a very rare condition and it obviously wasn’t. Most people who had experienced it, or knew of other people who had experienced it were really very sympathetic because they'd all said they'd had real problems. So there you go, that was a bit encouraging I suppose.
Michael found out on a forum that he could buy a kit to monitor his own uric acid levels. A few people thought that the fact sheets on the UK Gout Society website were good. Pat found the Arthritis Research UK (ARUK) booklet on gout helpful and easy to understand. Janette found information from the Gout Association helpful. A number of people joined internet support forums or discussion groups for people with gout.
The internet has been Arthur’s most useful resource. He was reassured to find out how many other people were also affected by gout.
The internet has been Arthur’s most useful resource. He was reassured to find out how many other people were also affected by gout.
Age at interview: 63
Sex: Male
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Well, thankfully we’ve got the internet. If we hadn’t have got the internet then I think my lack of knowledge, or my level or knowledge would be virtually the same as what it was 30 years ago, because where do you go to find out these things? But because of the internet now there’s a wealth of information, although it hasn’t resolved the problem, one of the things it brought home to me was how big a problem it is, and growing, because you tend to think that there’s only you in the world, whole wide world, that’s suffering with this particular problem and why you sort of thing. By looking at the net obviously you can see that it, that’s not the case, so the internet is our greatest source of information, and I still check it on a fairly regular basis to see if there’s anything new, but it’s all pretty much, seems to have reached a, not a limit, but it seems to have reached a point where most of the information is the same at the present time. Whether sort of research that you’re doing is going to, you know, increase our knowledge or whatever it is you’re trying to achieve, I don’t know but the internet is the place for us, that’s where we’ve been.
Many people found a lot of conflicting and confusing information about diet and complementary treatments on the internet. The evidence about diet and gout suggests that it is only
excessive consumption of high purine foods (e.g. red meat, offal and shellfish) and alcohol (particularly beer) that should be avoided. These foods
can be eaten in moderation and there is
no evidence that it is necessary to avoid them entirely. A few people bought gout recipe books to give them ideas about how to eat fewer foods that were high in purines. (For more see ‘
Diet and self-management for gout’).
Ivor did research about gout and diet but found that there was no agreement about particular foods that might trigger attacks.
Ivor did research about gout and diet but found that there was no agreement about particular foods that might trigger attacks.
Age at interview: 69
Sex: Male
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Well we went to the library, I don’t think in those days we had internet, [laughs] you know, and I got various publications on gout, from time to time there are articles in newspapers which we picked up on. In more recent years I've looked up online information relating to gout and the causes of it. And I think for as many articles that are written there's a different identifier and you know if I were to - I just get the impression that if I were to follow all the advice that’s in all the articles that I've read, I wouldn't eat or drink anything ever again [laughs]. Because there just seems to be such a wide array of possible causes. And I'm sort of a bit nonplussed by it all really.
People had often been given dietary advice by health professionals about other health conditions they had, but only a few people received specific advice about gout. Some found that the dietary advice for their other health conditions conflicted with information on gout. They found it difficult to work out what they could eat that would not cause problems. Several people believed that their doctors would not have time to discuss gout and diet with them or be able to give them any more information. A few thought that it would be helpful to discuss gout with a dietician.
Eddie was advised to eat plenty of oily fish because of his heart condition, but then found out on the internet that eating less oily fish could be helpful for gout.
Eddie was advised to eat plenty of oily fish because of his heart condition, but then found out on the internet that eating less oily fish could be helpful for gout.
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This is where you’re at cross purposes you see, the hospital said, “Now eat plenty of fish”, you know, “Eat your mackerel” and them and that, and when you look at the gout, “Don’t eat that fish” you see, “You mustn’t eat that.” So I’m a bit crossed purposes sometimes and you have to sort of go down the middle yeah.
You mentioned the sort of conflict between the advice that you’re given in terms of diet for your heart and the advice for gout, have you ever discussed that with any of, your GP or anyone?
No, not at all, it’s something I just found out myself, because when I left the hospital, they looked after me very well, I had cardiac nurses come to see me, “Oh you must eat this and this.” It wasn’t until I started looking on the internet and, gout, mackerel it’s the worst thing you can do sort of thing, yes so there was conflicts yeah but it was, nobody told me about the gout.
A few people looked at medical guidelines and academic publications about the diagnosis and management of gout. Several looked for information in books or read articles in newspapers and magazines. Friends, colleagues or family members sometimes passed on information that they had come across. Relatives or friends with gout also passed on tips that they’d found helpful.
Some people were worried or frightened by information they came across about people who had severe gout affecting many joints. A few had seen images on the internet that scared them. Several people were worried when they found out about the long-term damage that gout can cause if uric acid levels stay high. Sue had not looked on the internet because she did not want to frighten herself. She, like others, preferred to rely on information from her doctor. Jonathan said that the information his rheumatologist gave him was ‘fantastic’.
Jonathan was worried when he saw some extreme images on the internet of tophi and joints affected by gout.
Jonathan was worried when he saw some extreme images on the internet of tophi and joints affected by gout.
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Well, if you go in Google images for gout, then, don’t do that. Because, of course, I suppose, you know, people with later stage or uncontrolled gout, which must be one of - well, which is certainly, you know - if you talk about the things that worry you about the disease, I suppose that would be it. So if you go on the internet, start looking at images of tophi and, you know, the effect it can have on, long-term, on joints, then that’s not the first thing, I suppose, you want to encounter, with no understanding of the, the disease. There are, well, what I think are quite effective treatments and management of the disease. So, you know, encountering those [Laughter] images as the first port of call, not knowing, yeah, what’s going to happen next is difficult, so, yeah, I wouldn’t do that again.
A few people had seen stories on television or in newspapers in January 2013 about the first person in the UK to have a hand transplant. They were shocked and concerned to find out that he had stopped being able to use his own hand because it was badly damaged by gout. Other people had read about the comedian Mel Smith, who died in July 2013 and had become addicted to painkillers he was taking for gout.
Both of these situations are very rare.
Last reviewed December 2016
Last updated December 2016
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