Jonathan

Brief Outline: Jonathan was diagnosed with gout in 2007, and bought a kit to monitor his own uric acid levels. He has had attacks in his knee and ankle. Jonathan now takes 400mg of allopurinol every day, and has not had an attack for 18 months.

Background: Jonathan lives with his partner and works as a University Lecturer. Ethnic background/nationality: White English.

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Jonathan was diagnosed with gout in 2007 after experiencing an attack in his right knee. The pain started out of the blue, and he could not bend his leg. At one point he considered going to A&E or telephoning for an ambulance in the middle of the night because the pain was so excruciating and he did not know what was causing it. He thought that it must be a sports injury or another type of physical injury that he had sustained without noticing. He decided to wait and see if the pain and swelling went away, but after a few days his knee was no better so he visited his GP. He was told by his GP that he had arthritis. The GP did some blood tests and told Jonathan to return in a week. Jonathan was initially shocked and distressed to learn that he might have a form of arthritis, and felt that he was too young to be diagnosed with it.
 
When Jonathan returned to see his GP the following week, he was told that it was likely he had gout. His blood tests showed that his uric acid levels were slightly raised, but still within the normal range. Jonathan felt that the pain of gout was ‘debilitating’. He had never experienced pain like it before, and had to have a week off work. Looking back, Jonathan now believes that his gout started a several years before his diagnosis. He had visited his GP on a few occasions when his ankle had been swollen, believing that he might have twisted something while playing football. His GP had advised him to take ibuprofen. Jonathan now thinks that these symptoms were actually due to attacks of gout. 
 
Jonathan asked his GP for a referral to a rheumatologist. The rheumatologist did some more blood tests and also took a sample of fluid from Jonathan’s knee. There were no uric acid crystals in the sample the rheumatologist took, but he confirmed the GPs diagnosis of gout based on the symptoms that Jonathan was experiencing and his raised uric acid levels. Jonathan’s symptoms persisted for about three months, but were eventually resolved after the rheumatologist gave him a steroid injection in his knee. At this point, the rheumatologist suggested waiting to see if Jonathan experienced any more attacks. 
Over the next 12 to 18 months, Jonathan experienced further attacks of gout. They increased in frequency, although they were never as severe as the attack that led to his diagnosis. They affected Jonathan’s knee and ankle, and were causing him issues with mobility. Occasionally he had to have a day off work. He took diclofenac to manage his attacks.

Jonathan wanted to know as much about gout as possible, and looked on the internet for information about diagnosis and management. Some of the images of gout that he came across on the internet made him worry about what could happen to him in the future. He also joined an internet support forum for people with gout.

Jonathan wanted to understand and manage his condition and so he decided to monitor his uric acid levels himself. He bought a kit to do this, and wondered if he could manage his gout through changing his diet. His partner was very supportive and found recipe books for gout. He tried eating foods that were low in purines and avoided foods high in purines such as shellfish. He also tried having cherry juice and cherry tablets. He monitored his uric acid levels, but could not find any relationships between what he was eating and these measurements.

In 2010 Jonathan went back to see the rheumatologist, and they decided together that he would start taking allopurinol. At first Jonathan did not like the thought of taking medication for the rest of his life, and found it difficult to adjust to the idea. He began taking a low dose and then increased this, as advised by the rheumatologist. He had a minor attack of gout about 18 months ago and his uric acid levels were above the target range at that point. After increasing his dose of allopurinol slightly he has had no further attacks.

Before he started taking allopurinol, Jonathan found that he would be more likely to have attacks if he was not well hydrated, or feeling stressed. He still tries to make sure that he stays hydrated by drinking plenty of water.

Jonathan does not often think about having gout any more. He takes 400mg of allopurinol every day, and tests his own uric acid levels about once every three months. He feels that gout does not impact on his lifestyle and he has not had to change his diet, but he wonders if his liver function should be monitored periodically. Jonathan would like to know more about any future long-term implications of taking allopurinol and being diagnosed with gout at a relatively young age. 

Jonathan asked to be referred to a rheumatologist. He was hoping that a sample of fluid from his knee would confirm his diagnosis, but there were no uric acid crystals in the sample.

I got a referral to that rheumatologist, via the GP, and then went to see the rheumatologist, who took - so took bloods again. Again, I had, yeah, I had elevated, urate levels. Clinically it sounded like gout. I did ask to, to get an aspirate of my knee, to try and confirm it, you know, get the gold standard diagnosis with crystals - and I had a steroid injection at the same time, to resolve the knee, because it had been grumbling on. And we didn’t actually get, there weren’t any crystals in the sample, and I don’t know, so I’ve never had a, a definitive diagnosis, so, so it was a, a combination of the hyperuricemia and the clinical presentation. So that’s – so the GP said, “It is gout”, and then the rheumatologist confirmed that.

Jonathan had been to his GP a few times when his ankle was swollen and was only prescribed anti-inflammatories.

I was diagnosed six years ago, and, so that was the result of – I had what I now understand to be a major attack of gout in my right knee, so that, sort of prompted me to eventually go to the GP after a few days suffering at home, not in silence, as my partner would say. 

Prior to that, I did have a, well what I now understand to be a couple of minor attacks. So I’ve always had – the only attacks I’ve ever had are in my right ankle and my right knee. So a couple of occasions before that I had been to the GP. So when I was playing football I thought I must have twisted something that I’d not noticed, so my ankle had blown up. And he just sent me away and told me to take some ibuprofen or whatever. So I think they were actually gout 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.

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. 

Jonathan knew that there were rare side effects of allopurinol. He was worried about taking his first few tablets but had no problems.

So the big thing, I think, was initiating the treatment, because, “Am I going to have an allergic reaction?” Okay, people have got to warn you of that even though it’s quite, it’s quite rare. So, actually, “Am I going to have a reaction?”

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.

Jonathan’s rheumatologist reassured him that gout could be treated so that it did not affect his lifestyle. Jonathan was pleased to find that taking preventative medication achieved this.

The rheumatologist was fantastic. He was absolutely brilliant. He was able to tell me what is – well, explain what was going on, what I might expect. Yeah, and map out what the, the different options might be in different scenarios. So if I got frequent attacks, that we consider going on, you know, using allopurinol. It actually made it real in that he was, you know, I suppose, just coincidentally, was able to say that he had, you know, had gout himself, reassured me that I shouldn’t, you know, take grave concern about it. That it was manageable. That it needn’t affect my lifestyle, you know, irrevocably.

Allopurinol has been really good, so no attacks whatsoever. It hasn’t, at the moment meant that gout’s impacting on my, my lifestyle, at all. So I generally don’t have to watch what I drink. I don’t consider trigger foods. I know, you know, I’ve got my theory about what people do, in relation to gout, and lots of people, initially, when diagnosed, look at trigger foods. ‘Is it my diet? Is it this, is it that?’ and try and change all those things. Find no difference, and they’ve ended up on allopurinol or, or equivalent, anyway. So, yeah, it doesn’t change what I do at the moment.

After adjusting to the diagnosis, Jonathan feels that he is now back to ‘life as normal’.

It’s just life as normal. So I just take some pills every day. I don’t have gout attacks. It doesn’t really bother me. So, that’s – yeah, it’s different to, you know, if you reflect back on the process you go through when you’re first diagnosed, “Oh, my God, what’s going on? What are the implications? What can I, you know, is it something that I’m doing, in terms of lifestyle, which is affecting this? Can I change that?” So that, that’s different, because you were, you were adjusting to it. And then I actually realised, you know, probably I’ve got to go on allopurinol anyway, and I can lead – I can go back to, to normal again, instead of worrying about, you know, not eating calves liver or things like that, which I love calves liver, so... [Laughter].

Jonathan was worried when he saw some extreme images on the internet of tophi and joints affected by gout.

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.