Gout

Decisions and feelings about gout treatments

There are two types of treatments for gout – treatments for the symptoms of attacks, and treatments that prevent attacks and reduce uric acid levels to prevent long-term problems. 

Ivor was relieved to find out that gout could be managed. He was pleased he could continue playing football and squash.

Ivor was relieved to find out that gout could be managed. He was pleased he could continue playing football and squash.

Age at interview: 69
Sex: Male
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What was important was that I was told and soon figured out that it could be controlled, because at that time I was still playing football actively, so you know I was a bit fearful that if - if this was something really unknown that I wouldn't be able to do any active sport again, so knowing that it could be controlled, that was really helpful. Yeah, so I carried on playing football after a while and squash and whatever. So that was okay. Because I - I think if I'd have been told then that it was a really serious condition that was not really treatable, then I'd have been - I think I'd have been really upset about that. 
Treating attacks

Many people had no problems with the medication they took to treat attacks. Some wanted to try different medication because they had heard good reports from others with gout. Michael asked his doctor to prescribe naproxen and co-codamol after reading about them on an internet forum. Arthur found that the tablets he was taking made him feel sick and very tired. He asked his GP if he could try another type of medication that his friend with gout had been prescribed. He has no problems with the new medication. 

Some people thought that they could manage their gout by just treating individual attacks. A few felt that it was ‘not worth’ taking long-term medication because they were not having attacks very often. Some GPs shared these views. Many people were unaware that they could get permanent joint damage if they did not take preventative treatment to reduce their uric acid levels. 

Naresh felt that he had no choice about taking preventative medication because his doctor told him about the risks of long-term problems if he did not.

Naresh felt that he had no choice about taking preventative medication because his doctor told him about the risks of long-term problems if he did not.

Age at interview: 62
Sex: Male
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It's not curable, but if you take the medication it will help you so I mean it will be still all your life, you know. But the doctor said if you don’t take any medication it will get worse, and it can affect your joints. I mean permanent damage. So I had no choice, I have to take the medication.

He said if you don’t take much care it can affect your kidney also. And cause kidney stone and things like that. So it scared me at the time, because it can damage your kidney.
Some people found it difficult to choose between taking colchicine – which gave them side effects of diarrhoea and sickness – or putting up with the symptoms of an attack. Other treatments are available as alternatives to colchicine. (For more see ‘Treating the pain and inflammation of gout attacks’ and ‘Side effects of gout medication’). 

Ongoing preventative treatments

Some people spent several years treating individual attacks as and when they occurred before they started taking daily medication to prevent attacks and long-term joint damage. For some, this was because their GP did not suggest taking preventative medication until that point. Others had discussed preventative medication with their GP before, but had chosen not to take it when it was first discussed. Some people did not go back to see their doctor when they were having repeated attacks so it was a while before preventative medication was discussed. 

Ian did not tell his first GP about all the attacks he was getting. He now wonders if he should have asked his GP for more information about treatments.

Ian did not tell his first GP about all the attacks he was getting. He now wonders if he should have asked his GP for more information about treatments.

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Whether I just grinned and bear it, and didn't really tell my first GP all the attacks I was getting all the time, and how painful it was and whatever, they might have then have put me on allopurinol. I just sort of took the tablets, put a bit of an ice pack on it and got on with it really. As most blokes tend to do, don’t they? So I might have - I might have pushed a bit more maybe in the early years and months to understand more from the GP about what options there would have been, and that would have - could I have started taking allopurinol earlier, is that right? Those are the questions I haven't got any answers to, but that might be something for other people to consider and talk to their GPs about. 
People who decided to take preventative treatments were usually happy with their decisions and relieved when their attacks became less frequent. Like Harry and Sue, a few people decided to start taking long-term medication when their attacks became more frequent. Harry had an allergic reaction and had to stop taking allopurinol. This is a rare side effect. He then had regular attacks for several years before he went to see a specialist. He wishes that he’d had ongoing treatment earlier to prevent long-term damage. 

Dealing with attacks felt like a ‘firefighting exercise’ for 38 years until Harry saw a specialist. He now takes febuxostat and no longer has attacks.

Dealing with attacks felt like a ‘firefighting exercise’ for 38 years until Harry saw a specialist. He now takes febuxostat and no longer has attacks.

Age at interview: 78
Sex: Male
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I had all sorts of tablets to try and keep it under control, nothing seemed to work, it was always just a firefighting exercise, that I'd get an attack, I would take tablets to get rid of it, and sit back and wait for the next one. At the end I suppose I was getting an attack about every six months, until 2010, when I went to see a specialist in this field and we sorted out febuxostat, which I now take, along with the colchicine, I take one colchicine each day, and since middle of 2011, I haven't had an attack of gout at all. Seems to be well under control. And - if that’s the regime that it requires to keep it under control, then I will swallow these three tablets each morning for the rest of my life and be quite happy to do it.

Sue started taking allopurinol when her attacks became more frequent. She had no problems with the medication and no longer has attacks.

Sue started taking allopurinol when her attacks became more frequent. She had no problems with the medication and no longer has attacks.

Age at interview: 68
Sex: Female
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Sue: Gradually I was getting it more and more frequently and it was mainly in my foot, my toe particularly but also along the side of my foot, the bone along there and it wasn’t inflamed then, it was just painful, so I had it about three or four times in the space of a couple of months, so in the end, obviously the surgery did a blood test, and put me on allopurinol permanently, and since I’ve been on that, I haven’t had gout at all.
When some people were first prescribed preventative treatments they did not know they would have to take the tablets for the rest of their lives. These medications help to reduce levels of uric acid and keep them at a low level. Some people were not given blood tests to check that they were taking a high enough dose of allopurinol for it to be effective. Others who were on relatively low doses of allopurinol did not know that the maximum dose was 900mg. They thought that it might not be possible to increase their dose much more if they needed it. 

Peter was prescribed allopurinol straight away by his GP. At first he did not realise that he needed to take it every day for the rest of his life.

Peter was prescribed allopurinol straight away by his GP. At first he did not realise that he needed to take it every day for the rest of his life.

Age at interview: 75
Sex: Male
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I came away, started taking my allopurinol, and yes it went away, so I stopped taking my allopurinol, and, after a week or so, my fingers and toes started aching again, hurting, so I went back to the doctor and told him and he said, “Oh yes, you mustn’t do that, you are going to take allopurinol now for the rest of your life. You will take a tablet a day and that will cancel out the uric acid.” So I came away, and, for the next 20 years no problem, I just carry on and don’t know I’ve got high uric acid levels and I carry on living.
Some people stopped taking preventative medication because it did not have the effects that they were expecting. Not everyone was told that starting the medication could trigger an attack, or that it could take up to two years for attacks to stop. 

A consultant rheumatologist explains why starting allopurinol can trigger attacks and why it can take up to two years for attacks to stop.

A consultant rheumatologist explains why starting allopurinol can trigger attacks and why it can take up to two years for attacks to stop.

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People often find that when they start to take allopurinol, that they can get an attack of gout. The reason that this happens is because crystals of uric acid are normally found tightly packed within the cartilage that lines the bones, and when they start taking allopurinol, their uric acid is lowered so the crystals start to dissolve and start to become smaller – meaning that they can be more easily shaken loose into the joint, which is when that leads to inflammation and to an attack of gout. So although people often see having an attack of gout after starting allopurinol as a side effect of allopurinol, and clearly that’s something that from the patient’s point of view is unwanted, we should actually be seeing attacks like that as a sign of successful treatment – a sign that treatment is working – because it is telling us that uric acid levels are starting to be lowered, and that crystals are starting to dissolve. This also explains why people can continue to have attacks of gout for up to two years after starting allopurinol, because it takes up to two years for the crystals to dissolve completely.

Jeff V found it frustrating that his attacks did not stop when he started taking allopurinol. He did not understand why this was happening.

Jeff V found it frustrating that his attacks did not stop when he started taking allopurinol. He did not understand why this was happening.

Age at interview: 68
Sex: Male
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I started on 100 milligrams first, and it didn't improve. And I was taking the, the painkilling tablet at the same time. But when I was taking the 100 milligrams, your, your mind thinks that you're – “Why am I taking - well, why is it - it started, it gets worse. Why is it getting worse?” And it gets frustrating and you go to the doctors and he ups it to 200 and it still doesn't go away and you're still taking the painkiller. And he ups it again to 300 and it was still - it just seems like it gets a balance and it's very difficult to, to understand why - what's actually going on. 

So you started taking that, the long-term one while you were having an attack of …?

Gout.

Yeah. And did your doctor say anything about why it might still be getting worse?

Not really, no. No. I went down there with being really frustrated, you know, “I'm taking these tablets and it's getting worse”, as it did.
If an attack happens when someone is taking allopurinol, they should continue to take 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. 
Several people appreciated their GP being supportive of the decisions they made about ongoing preventative treatment. There are no known unwanted side effects in later life for people who take long-term allopurinol, but some people did not want to take ongoing medication because they were worried about long-term side effects or did not like the idea of taking daily medication (for more see ‘Thoughts about the future and long-term effects of gout’).

Runibunar was reassured by his rheumatologist that the treatments he was taking were safe. He also has regular checks to monitor his kidney function.

Runibunar was reassured by his rheumatologist that the treatments he was taking were safe. He also has regular checks to monitor his kidney function.

Age at interview: 38
Sex: Male
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I probably was a bit worried at the time because you know for loads of medicines that I was taking, I was thinking that there would be an effect on my body as well, so I asked them really that, “For all these kind of medicines that I am taking is it still safe?” then they told me that, “Yeah, it's still safe because we are giving you very safe medicines for your illness”. And that’s why they just - every time that I went to - every time I go to them, they always check my - check my - my liver functions, my kidney functions, so that they will make sure that - because even the rheumatologist gave me a joke that, at the moment you’re still doing okay [laughs].
Some people felt that daily medication was a better option than dealing with attacks or long-term joint damage. Vic initially misunderstood what he was told about allopurinol and thought that it caused major side effects. He then found out more information and, at a later date (after a bad attack), decided to try it. He wishes he had known more about allopurinol at the start because it could have saved him ten years of painful attacks. 

Jonathan did not like the idea of taking medication for the rest of his life but is now used to it. He worried about having a reaction to the medication but had no problems.

Jonathan did not like the idea of taking medication for the rest of his life but is now used to it. He worried about having a reaction to the medication but had no problems.

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I didn’t like the idea at the time, of going on a medication for the rest of my life. So, again, you know, it is a shift, I suppose, and a shift in the way of thinking about, you know, the illness that you’ve got. So, you know, the prospect of, “I’ve got to take this for the rest, you know, the rest of my life”, is, it was difficult to adjust to.

So, I can remember we, we actually, I was away with my partner at Christmas. We went to stay in a B&B in the Lakes, and I was going to start allopurinol. So I had my 50-milligram tab, and it was probably quite, quite a big thing [Laughter]. So this is the first time you’re going to take something that you’re probably going to take for the rest of your life. So, I had that, nothing happened, and then over the next few – so I went up to 100 milligrams, and I think it was that for a couple of weeks, and then 200 milligrams, then 300 milligrams. 
A few people were less willing to take preventative medication because gout is not a life-threatening condition. Some were already taking tablets for other conditions and did not want to take any more. A few people were prescribed allopurinol but never took the tablets. Hazel is unable to take allopurinol tablets because she finds it very difficult to swallow pills. She has to crush or dissolve her colchicine tablets in water so that she can take them during attacks. 

Jean takes several tablets a day for other conditions. She has wondered about stopping allopurinol because it would mean taking fewer tablets.

Jean takes several tablets a day for other conditions. She has wondered about stopping allopurinol because it would mean taking fewer tablets.

Age at interview: 78
Sex: Female
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So there’s always a possibility that I will decide myself not to take them anymore and see what happens, but just keep a few in, in case.

And why would you be thinking of stopping taking them?

Well, because I have so many other tablets to take, you know. I take, one, three, six, eight, eight a day, plus however many painkillers I have to take. So, and two wouldn’t make an awful lot of difference, but it would be two less.
Like Carole, many people we spoke to had tried to identify foods that might be triggering their attacks. Some believed that they had been able to do this but many did not find any particular foods that made a difference. Although people often believed that diet was as effective at preventing attacks and long-term damage as medication, scientific evidence does not support this view.

Even if people believe that changing their diet has stopped attacks, uric acid levels can still be high enough to put them at risk of long-term joint damage. Most people need to take daily medication to reduce and maintain their uric acid at a low enough level to prevent attacks and long-term problems. It is not usually possible for people to reduce uric acid enough by diet alone, although many people wanted to try this to avoid medication (for more see ‘Long-term treatment to lower uric acid and prevent gout attacks and long-term problems’).

Carole’s attacks were becoming more frequent. She started on a low dose of allopurinol and now takes 300mg daily. Her uric acid levels are well within the normal range now.

Carole’s attacks were becoming more frequent. She started on a low dose of allopurinol and now takes 300mg daily. Her uric acid levels are well within the normal range now.

Age at interview: 64
Sex: Female
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Last year I was getting too many instances and it was spoiling things because I have a hobby that I enjoy, and if I'd got gout I couldn't pursue it until the gout had gone. And I actually came round to thinking that I needed to do something more about it than just trying to manage my diet and dealing with episodes when they occurred.

And have you done anything about that yet, then?

Yeah. Went to see my doctor probably this sort of time last year. I can't quite be certain. Probably March, April time. And I agreed to go on to allopurinol gout medication, although we didn't go for the maximum dose to start with - started on a low dose.

I was still getting attacks. I went for a six-monthly review with my GP. It’ll be seven weeks ago now. And I was chatting to him, telling him how I'd been, and I said to him, "I am still getting gout." And I think I'd said to you I'd had probably three or four attacks from somewhere like last autumn through to when I went to see the doctor. Well, my understanding was that the idea of going on the allopurinol is not to have any attacks. So what he did - I was on 200 milligrams - so he upped the dose to 300mg but asked, as I say, for a blood test in six weeks to see what had happened. And I had that test last week and was told that the uric acid levels were now within a normal range, which I don't think they've ever - well, they haven't been for as long as I can remember. However I did have an attack again after I'd seen my GP seven weeks ago, but I was - or I did take anti-inflammatories as well, because I thought, "Well, we've upped the dose by 30, 33%. I suppose there's a chance it might kick off and make things worse." And I had a mild attack. I knew I'd got gout, but it didn't actually stop me doing anything except make it a bit painful to get my shoe on and bend - because it was in the little - the base - the joints in my little toes in - on one foot. And, as I say, I knew I'd got it, but it didn't actually stop me walking or doing anything. It was just a little bit painful; nothing like it might have been without medication or without the anti-inflammatories. And, touch wood, I haven't had it since.



Last reviewed December 2016

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