Simon

Brief Outline: Simon has had four attacks of gout. He was prescribed various medications, but experienced side effects from taking indometacin. He found naproxen to be most effective in treating an attack. Simon believes his attacks were triggered by certain foods.

Background: Simon has two children and lives with his wife and one child. He works as a University Lecturer. Ethnic background/nationality: White English.

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Simon’s first attack of gout was in 2008, when he was 50. He woke up in the night with a very painful big toe, and realised straightaway that it was gout. He recognised the symptoms because of his professional knowledge and health background, and also because his father had been diagnosed with gout. The attack lasted for about 24 hours, and Simon took paracetamol to relieve the pain. He was not particularly concerned about having an attack of gout because he thought that it was just a one-off occurrence.

Simon’s next attack of gout happened about a year later, again in his big toe, and lasted for 48 hours. However, he then experienced a third attack in 2010 which did not resolve itself as his previous attacks had done, so Simon visited his GP who officially diagnosed him with gout.

Simon’s GP initially prescribed voltarol, followed by colchicine – neither of which Simon felt had any effect. He was then prescribed indometacin which did improve his symptoms to some extent, but Simon experienced side effects including high blood pressure, and tingling and loss of sensation in his feet. Simon was concerned by these additional symptoms. Eventually he felt that the relief he was getting from the indometacin was not worth the side effects he was experiencing so he decided to stop taking the tablets. The tingling and loss of sensation stopped, and his blood pressure returned to normal. After a period of time, the attack of gout Simon was experiencing also finished. In total, the attack lasted for about six months.

In January 2013, Simon experienced a fourth attack of gout. He did not go to his GP straight away because the treatments he had been prescribed for his last attack had made him so unwell and were not effective in stopping the attack. However, after about a month, the symptoms got so bad that he did go to see a GP. He was prescribed naproxen, which he found to be very effective, and reduced the symptoms quickly.

During Simon’s attacks of gout the pain was excruciating, and he would be watching the clock to see when he could have his next dose of painkillers. It was the worst pain that Simon has ever had. Although Simon’s attacks were in his feet, during his third attack he also felt that he could feel symptoms of gout, though not pain, in his thumbs and elbows. He struggled to walk or to drive, although he did try driving an automatic car which was easier. The attacks also affected Simon’s leisure activities such as playing sports.

Simon was not given much information by the GPs he saw, but he accessed information himself on the internet. He found that some of the information was contradictory, but that the NHS Choices website was particularly helpful.

Simon found that being at work helped to take his mind off the pain, and he uses himself as an example case when teaching students about long-term conditions. At one point he bought shoes that were three sizes too big so that he could get a shoe on his foot. He also found crutches were useful in reducing the weight he put on his toes when he walked.

Following the attacks of gout, Simon now has osteoarthritis in both of his big toes. He has to wear special insoles in his shoes, and he can no longer play football because it hurts to kick a ball. He still plays badminton, but he has had to reduce the amount of time he plays for, and often has to take painkillers afterwards.

Simon’s GP mentioned the possibility of long-term medication, but because of the side effects Simon experienced with the other medication, he decided not to start taking another medication. Simon avoids certain foods that he believes have caused him to have attacks. He also tries to drink plenty of water.

Looking back, Simon believes that it would have been useful for him to ask for a referral to a specialist who had more knowledge about treating gout. He has also only had his uric acid levels checked once, and believes that it would be useful for GPs to actively monitor people with gout.

Simon feels positive about the future, and believes that if he continues to monitor his diet, he will not get another attack of gout. 

Simon found crutches helpful for walking because they took the weight off his toes.

Well, I think one of the best things I do, at one time I put myself on crutches and I found that helped me because it took the weight off my toes, because every time you walk you put your body weight through your toes. So I actually found that trying to reduce the amount of weight through it was great because with me, going through both big toes, it was just excruciating every time I took a step. So any way you can find that you can, you can, not walk as much but still keep mobile. So I think really that would be a thing – it seems extreme sometimes to say I used a pair of crutches, but I found it very useful, not a negative thing but a positive thing. 

Simon thinks doctors don’t always monitor uric acid levels. He has had his measured once.

I listened to a programme actually about gout, it seems to be there, and somebody was saying that one of the criticisms of the medical profession is that they don’t monitor people’s uric acid levels. Interestingly, I’ve only had my uric acid level done once all the time I’ve had gout. I’ve had diagnoses of gout, but I’ve only had it done once. So you tend to think about it – which one of the criticisms of the medical profession is - well how do you know what you’re treating when you don’t monitor it? I’ve not been monitored. As I say, I’ve had it done once, which seems to be, when I listened to the programme, probably one more time than most people. It’s just done on – I think because the signs and symptoms are so obvious that people assume that you’ve got gout. I think last time I did have a conversation with a GP who thought – he excluded septic arthritis because he thought – and took my temperature and said that was a diagnostic answer if it was septic arthritis or gout, but I have been examined without taking anything off, my shoes and socks off. I’ve been told I’ve had gout without anybody looking [laughs] and didn’t seem to be interested in where it was. Because I’ve actually, I’ve talked about it being in my feet, but I’ve actually also got it in my hands. Not as much, but I’ve got it – especially in the joints of my left thumb. No-one has ever, ever, ever asked me about it.

Simon tried several drugs that did not improve his symptoms. Indomethacin helped, but his blood pressure became high so he stopped taking it.

I started on Voltarol and that really didn’t touch it at all. Then I was started on – I apologise, I can’t remember the name of the drug, it begins with C.

Colchicine?

That’s the one. I was put on that, that didn’t touch it either, though I remember the doctor sort of saying, “Well, this will get rid of it totally.” That made no difference whatsoever. Then I went to indomethacin, which actually seemed to give me a – more relief than the previous two, which didn’t give me relief at all. But, as I said, the side effects of that were horrendous. I really did – I remember I was then having to cope with very, very high blood pressure. My blood pressure went up to – went over sort of 240, it really shot up the blood pressure from that drug. I seemed to have every side effect that’s elicited with that drug, so I found that – though I seemed to get some relief from it, but not very much. It was – I was weighing it up – was the relief I was getting better than the side effects? And it wasn’t in the end, so I actually stopped it myself. And when I came to that conclusion, my gout seemed to have just sort of resolved itself. 

Could you talk a bit more about some of those side effects?

Well yeah, it was very – as I said, my blood pressure was very, very high. I also seemed to develop– well it’s listed on the thing - I seemed to develop a little bit like a peripheral neuropathy associated – which was quite disturbing at the time. I had some sort of tingling in my feet and my – I also couldn’t feel my feet as well as previously, which was quite disturbing at the time and I thought – I didn’t know what was going on really, because – then I started looking at the side effects of indomethacin and it listed it. I thought, “Mmm, this is interesting.” So the side effects were becoming – becoming more worrying that the gout and that’s one of the reasons I stopped taking Indomethacin.

Did you decide to stop that? 

Yes, yeah.

Was that in consultation with your GP or…?

[Sighs] probably a bit of both really. I mean I discussed it with them, because I was being – they were monitoring my blood pressure at the time and sort of trying to come to conclusions about it, but I think both of us probably felt we needed – I needed to stop. As soon as I came off it my blood pressure went back to normal, and my pins and needles went [laugh] back to normal and everything back to normal, so I’m not going to go on indomethacin again [laughs].

Simon felt a bit like he had mild flu during his attacks. He could also feel that gout was affecting other joints even though they were not painful.

I think you don’t feel – I think the example I’d give is that it feels like a little bit like you’ve got flu but not very – you know, sort of minor flu really. You realise that there’s something going on in your body and it’s not quite right, which I think you only appreciate when you haven’t got it. I think that’s the best description of it. You – it’s probably slightly unwell, apart from the pain in your joints 

So the third time it was in my – it was in my right big toe, but I was conscious of it being elsewhere. It might sound strange, but I was conscious of it possibly at times being in my knees and possibly being in my elbows, but not as bad and nothing really that I couldn’t tolerate. But the fourth time it was much more conscious. It wasn’t in my right foot, it was in my left foot, but also in my left thumb and possibly a little bit in my right thumb. I was conscious of it there, not really painful but just being conscious that it wasn’t just in one joint. 

Simon went to work with no socks on. He bought shoes that were three sizes too big because his swollen foot wouldn’t fit into his usual pair.

There’s nothing you can do and at times you just – at times you don’t sleep. You can’t put your foot down. You have to find some way of walking. You can’t tolerate anybody being there. You can’t tolerate, you know, to put a sock on is – can be excruciating. I mean I remember at times I just couldn’t even put a sock on and I just came to work with no socks once, but I managed to get a shoe on. Having to buy – I remember once, this is the most extreme example; that I bought shoes that were about three sizes too big so I could get a shoe on.

Simon uses his own experiences when teaching his students about long-term conditions.

I actually use myself as an example with some of the students. I teach some of the students and one of the modules we run is about long term conditions. Now gout is listed as a long term condition, so I’m a good example of somebody who has a long term condition. And actually, during my last episode I actually let the students examine me, and they could see the nature of gout and how it’s impacted. 

It’s simple when you read it in a book, but actually when you come to it it’s not that simple. I think it’s made me reflect more and actually, luckily I’ve been able to reflect back to the students and explain that more and try and get that…. I think I’ve always been quite good at that, that long term – because I always worked in that area, but it’s given me, like I said to you, the simple things and probably more understanding of the situation and trying to get that through to students and the importance of it. These things are - the person has to live with it and has to come to terms with how to manage it themselves. That’s one of the biggest things I’ve learned, the fact that you have to actually sort of think about it and manage it yourself, because really no-one else is going to manage it for you. It’s a long term condition and GPs – the medical profession aren’t really interested in helping you manage. They might be interested in giving you – but they’re not really helping you. You’ve got to come to terms with, you know. When you go out of that practice and you’ve got to work out how you’re going to drive, how you’re going to walk, you’ve got to sort that out and people aren’t that interested in – you know because it’s not really a sexy disease, gout, is it?

It sounds like it’s been really important to you to sort of make the most of your experiences then in terms of passing things on and using those in real life situations with your students, is that how you feel?

Yes it is. I mean we often use – we try and use patients and patients’ experiences. We try and get those values and that empathy for people to see that. It’s actually quite useful and it’s something we’ve done and I’ve never – I’ve often thought quite deep about, “Should I?” But we’ve - I think the students find it very valuable that people are actually prepared to do that. I’m very good at setting boundaries about what the students can ask me about and what they can’t ask me about and what I show them etc., but I think it’s quite important. I think if you talk to them, they actually appreciate that real life. We do it with many other conditions as well. Not that we always try and develop conditions with the staff, but it’s – I think people can see that actually people can – they’re not – we are human, we suffer with everybody else etc. A lot of time students don’t think they’re going to be like this and that they’re going to get to a certain age and have a problem. They don’t see it, so I think it works very well. It’s been useful. To be fair, I suppose that’s one of the positive things that’s come out of it. I can’t think of any other positive [laugh] things, but that’s been a positive thing that’s come out of it.

Do you think that that’s almost sort of been a coping strategy for you?

Oh yeah, yeah, I think it is. It enables me to articulate, I think it is. You know I have – I’ve tackled it head-on and I think it helps me, it helps them to talk about – that’s one of the reasons why I’m doing this now. It just shares those experiences. I think you don’t have to – you don’t have to – you shouldn’t expect the medical profession to sort you out, you have to tackle it yourself. And I think talking about it and using the experience is useful. Though again, I think it, to realise it’s quite – at times it doesn’t feel it is quite a – at times it seems like the worst disease you can get, but when you haven’t got it, it seems like a trivial disease. Even now I’m quite trivial about it, because I haven’t – I’m not suffering from the pain, so I can quite joke about it etc. If it starts again I won’t be joking.

Simon’s appointments were with different GPs each time. He felt that they had a poor understanding of gout.

Unfortunately, I’ve struggled to see the same GP each time, which I think is one of the issues - that I’ve always been able to get appointments, but not necessarily with the same people, and so you often start again. I actually don’t feel they have a great un – I think they understand what gout is, but I don’t think they have the understanding from a patient’s perspective. To me it’s like, “Well, you’ve got gout. I’ll give you this drug. Bye-bye. Please don’t come back.” That’s the feeling I get. And when I, I think I’m a disappointment when I come back and say, “Well, it’s not really better.” I think that really is – I think that’s my feelings about it. 

How many GPs, roughly, do you think you’ve seen in relation to your gout?

Five or six. 

So at the point when you were in your third sort of episode, when it was going on for quite some time, you were seeing different….

Yeah. Each time I went, I saw somebody different who seemed to take a – it was like, “That drug’s not worked; I’ll give you one that will work.” That was the message I got every time.