Harry

Age at interview: 78

Brief Outline: Harry was diagnosed with gout in 1966. He was prescribed colchicine, but had an allergic reaction to allopurinol. In 2010 he was referred to a specialist. Harry now takes febuxostat every day, and has not had an attack of gout since 2011.

Background: Harry lives with his partner. He is retired, and previously worked as a Cost Accountant. Ethnic background/nationality: White English.

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Harry was diagnosed with gout in 1966 at the age of 31. The date sticks in his mind because his first severe attack occurred during the World Cup. Looking back, Harry now believes that he may have been experiencing symptoms of gout before his diagnosis. He regularly played sports like badminton, cricket and rugby, and often found that his toes were red and sore after playing. At the time, he attributed this to the exercise or believed that he had been kicked or injured himself, and the symptoms would disappear within two or three days. When Harry had what he describes as his first ‘severe attack’ in his big toe joint, he visited his GP who told him that he had gout. He was prescribed colchicine tablets to take each time he had an attack. Harry found that taking colchicine on its own took a few days to have an effect, so he also took co-codamols as well.

When he was first diagnosed, Harry’s priority was to be pain free. He did not realise that gout was causing long term damage to his hands and feet, and he now finds it particularly difficult to grip with his fingers. He believes that people should be more aware of the long-term damage that gout can cause to joints if it is left untreated. 

Initially, Harry was getting attacks around once every two years but the attacks became more severe and more frequent. Harry went back to the GP and was prescribed allopurinol. The day after starting allopurinol, Harry had an allergic reaction. The skin all over his body became red, and then peeled off. His GP advised him to stop taking allopurinol immediately. Harry’s GP then prescribed various medications, such as diclofenac and probenecid, but Harry felt that it was ‘always just a firefighting exercise’ where he would have an attack, take tablets to deal with the attack, and then wait for the next attack. 

Harry tried changing his diet, but what he ate did not seem to have any effect on his gout. He also tried various herbal remedies, but did not believe that any of them worked. 
By 2009, Harry was having attacks of gout around every six months. He describes the pain as being excruciating, and like having his toes sawn off with a hacksaw, without anaesthetic. His attacks had increased in severity, as well as frequency, and he was experiencing symptoms in his hands and knees as well as his feet. 

Harry felt that having gout affected both his leisure and social activities: he had to stop various sporting and social activities, and lost touch with friends and ex colleagues. Harry also felt that having gout affected the people around him, such as his partner, because he would become ‘miserable and short tempered’. Other people wanted to help, but Harry would be reluctant for them to do so in case they touched him and caused him pain. He felt frustrated because he couldn’t walk or drive the car, and so he had to stay in the house. He also felt that his partner was more reluctant to go out because she did not want to leave him at home on his own. 

In 2010, Harry developed what he believed to be an infection in his toe. However, his GP confirmed that it was a tophus caused by gout. At this point, the GP referred Harry to a specialist. Harry remembers having to wait quite a long time to see the specialist initially, but then saw him regularly for about two years, until his gout was under control. The specialist discussed the possibility of Harry starting on a very low dose of allopurinol and gradually building it up, to try and avoid the allergic reaction, but proposed that Harry started on febuxostat as an alternative. Harry wishes that he had seen the specialist earlier. He now takes febuxostat tablets every day, and feels that his gout is under control. He has not had an attack since the middle of 2011.  

Harry was happy with the support he received from his GP and the specialist, but he feels that now his gout is under control, there is no follow up or monitoring. Harry suggests that regular annual or biennial reviews by his GP would be reassuring, to ensure there are no other issues arising from taking long-term medication.

Harry had often had pain in his toes after exercise but did not realise at the time that this had been gout

I was first diagnosed with gout when I went to see my GP in - and it was in - roundabout March, April 1966. And the date sticks in my mind because it was the year of the World Cup, and the first severe attack that I had, the first time that it had made me ill and incapable of walking, was in June/July 1966. And that was at the time of the World Cup, and I watched it lying down on a settee, with my feet in the air, and not letting anyone near me at all. 

Prior to that I'd always led quite an active, sports, like I used to play badminton for the work's team, I played squash, I played cricket, I played rugby in the winter, and I used to find that, after the exercise, my toes would go red and they would be quite sore. It didn't last very long. It would last two or three days and then it would go away and I thought it was just the exercise and that maybe I'd been kicked or whatever, until 1966 when my GP said, "No, you have gout."

Harry did not realise that gout was causing him long-term joint damage. He now takes febuxostat every day and has noticed improvements in some joints.

I thought, “Yeah, it's something that is painful, it is something that comes and goes, and if I take tablets it will go away”, and I was prepared to do that, just to take tablets to ease the pain. Don’t realise when you get it, the effect that it's having on you, and I had quite some severe attacks in my hands as well as my feet. And that's left me now with permanent damage which I didn't realise was going to happen. It was just, “Oh, it'll go away”, and yes the pain goes away, but the effects of the attacks of the acid and the crystals doesn't go away, it remains there. Having said that, since I've been on febuxostat, the swellings have gone down. You wouldn't believe the difference in - particularly in my right big toe, how much it's decreased in size, over the last year and a half, it's - it's virtually back to normal. But my hands are still not right. No. Maybe they’ll go. Bearing in mind that I had gout for 40 odd years, it's not surprising really that some of the effects of that gout are going to take a long time to go away, but hopefully they will go away. 

Harry had an allergic reaction to allopurinol. He now takes febuxostat and has no problems.

And to start off with I was getting attacks two, two and a half year intervals. As time went on, from '66, the attacks got a bit more severe, and a bit more frequent, until ultimately I had to go back to the GP, and we tried to get on to some sort of permanent medication. And the medication, I've forgotten the name of it again, didn't suit me, I was totally allergic to it, and I only ever had two of these tablets before I had this violent allergic reaction to it, and had to stop taking it. From then on it was a question of taking painkillers of all sorts of varieties, and different tablets such as diclofenac, I had probenecid, 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.

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.

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.

Harry felt that the pain was like having his toes sawn off without anaesthetic. He warned people to keep away from him to avoid more pain.

It is excruciatingly painful. So much so that if - I used to find that if I thought anyone was coming anywhere near me with the chance that they might touch me or touch my foot, then I would - I would just sort of…"No stay away, stay away, stay away." And the poor dog as we had at the time didn't know what was happening, and people that would come in through the door and you know I'd say, "Sorry, don’t come any closer." And that it was that painful that I don't know how you would describe the pain that you get. It's something like having your toes sawn off with a hacksaw without anaesthetic. It couldn't be any worse than that.

Harry’s had to stop playing golf and dominoes. He’s stopped going to the pub, and misses the company of his friends and old colleagues.

I used to like playing golf, and I can't - I haven't tried actually as - for about two and a half years, when I had the gout, and then walking round really did make me feel poorly at the end of the 18 holes, I would come off the golf course, and I would feel not very good at all. Then when it affected my hands, then I couldn't grip the golf clubs, so there was no point in going down there. That meant of course I didn't see the people that I used to play golf with who were my ex work colleagues, so I lost all contact, both with the works and my mates down at the golf club. And gradually I was - I was running out of friends and associates because I was just not seeing them anymore. And they won't stop playing golf just because I'm not going there, so they carry on and - I haven't tried yet actually, I must try it again to see what happens, it might be okay. But if the club goes further than the ball, then it's no good at all [laughs].

And of course the other thing, more importantly I think, I had to stop - I loved playing dominoes, and I had to stop, you know, and the highlight of my week was Monday nights playing dominoes with the local farmers up the pub, and I got so that I couldn't hold them, I couldn't hold the dominoes in my hands, and I'd struggle now because – that’s about as much as I can get - and of course you can't play dominoes unless you’ve got a pint in your hand. When I stopped drinking I had to stop playing dominoes as well, and I haven't - I think truthfully I can say I drink now the equivalent maybe of two pints per week. So I'm virtually teetotal. And I don’t drink beer, I drink red wine which is probably even worse than the beer, but I don’t go up to the pub any more. And it's a pity, really, because I really miss the company and the general chat, and for me living out here, as you can imagine, the only way you know what's going on is if you're meeting at a central point, and that point was the pub.

Harry didn’t tell his employers that he had gout because he thought they wouldn’t take it seriously.

And did you feel that your employers were sort of - did they know about the fact that you had gout? 

They didn't know it - they knew that I was hobbling around, and they knew that I was walking around, didn't always use a stick, it was just on occasions when it was pretty violent, and if it got even more violent than the walking stick, and I used little aluminium crutches, elbow crutches, and yeah, I developed quite a technique on those, I could get along quite quickly. But again, as long as you turn up for work, and you're doing more or less what you're supposed to do while you're at work, I don’t think your employers are particularly bothered. 

Did you ever consider talking to them about it? 

No. They’ll only laugh won’t they if you - if you tell them you’ve got gout and they’ll have the same reaction as everybody else, "Oh, you'd better come and join us in the boardroom then." And silly things like that. So you - you don’t say anything and you – because it's not something you don’t - you put up with it, and hope it'll go away, but it doesn't.

Harry thinks better follow-up care is needed once people have been diagnosed and prescribed treatment.

I can't complain at all, from the support that I've had, both from the GP who initially sent me to the specialist and from the specialist himself, my treatment has been superb - no complaints at all. They’ve all been most helpful while in the process of keeping it at bay, I'm reluctant to say curing the problem, I don’t think the problem is cured to be honest, I think it's under control, but once it's under control, then fine. I think that sometimes the aftercare may be a little sketchy. If for instance, even if it's only say once a year, they were to say, “Well we'll give you five minutes, how have you been? Have you had your blood tested? Yes, you're doing all right, come and see me again in a year's time”. Just that sort of comfort factor that you haven't gone right through the net. And if something were to flare up again that they're there for you if needed. 

Harry says it is important for families to be tolerant if people are behaving differently during an attack.

For the person that you're living with, it's important for them to know that if you're having gout, that it is not pleasant. And try to be a little more tolerant, if they can possibly be a little bit more tolerant towards you, when you're going to fly off the handle for some reason or another. It's…it's not the usual state of affairs, if it was the usual state of affairs they wouldn't be living together anyway, or not for long [laughs]. It is a - in a way it's a joint disease, if you pardon the pun, [laughs].

Harry said that gout is not at all funny for people who have it. Other people find it funny because they think it is a ‘rich man’s disease’.

The thing about gout is it's funny. It's funny for everybody in the world, expect the person that’s got it. You’ve seen the cartoons in the Beano or the Dandy, where there's somebody sitting in a basket chair and his foot is wound round and round and he's got a bottle of port by the side of the - by the side of his chair, and that is the general perception of gout, that it's a rich man's disease, and if you say I've got gout, they think, "Oh, you must have a lot of money." And that’s the immediate reaction. Then the laughter starts. 

It isn't funny for the person that’s got it. It is excruciatingly painful. So much so that if - I used to find that if I thought anyone was coming anywhere near me with the chance that they might touch me or touch my foot, then I would - I would just sort of…"No stay away, stay away, stay away." And the poor dog as we had at the time didn't know what was happening, and people that would come in through the door and you know I'd say, "Sorry, don’t come any closer." And that it was that, that painful that I don't know how you would describe the pain that you get, it's something like having your toes sawn off with a hacksaw without anaesthetic. It couldn't be any worse than that.

Harry says try and get used to the idea that gout is unlikely to go away permanently, and that it may get worse. Ongoing treatment can prevent any long-term damage or problems.

Reconcile yourself to the fact that it's unlikely to go away. And get onto medication to get rid of the acid before it starts to do any sort of damage to your joints. That…in a way the pain that you get at the time I think is perhaps, although painful, is secondary to the effect that it's going to have - the permanent damage it's likely to do to your joints, because once you’ve got rid of the gout, chances are that your joints will still be affected by it. It's like arthritis isn't it? It's - the sooner you can get it treated, the less likelihood there is that you're going to have any permanent damage to your joints. And it's - it's well documented where the - where you're going to be - have joint problems, I think they can almost draw a roadmap now of the progress of gout, where it's going to go from A to B, to C, to D, and so on. Yeah, go and see your GP and get treated as soon as you can.