Thoughts about the future
Several people felt positive and optimistic about the way they were managing their gout, and did not anticipate any future problems. Jeff felt that it was no problem to live with gout once it was controlled by medication. Ivor felt that gout would not impact on his future because he knew how to manage his attacks effectively. Harry had noticed dramatic improvements in his symptoms since he had been taking daily preventative medication (febuxostat). He no longer had attacks and the swelling in his joints had gone down. He hoped that things would continue to improve but felt that, as long as the medication continued to be effective, he no longer needed to think of himself as having gout.
Tony felt that gout did not affect his life now. If things changed in the future, he might need daily preventative medication.
Tony felt that gout did not affect his life now. If things changed in the future, he might need daily preventative medication.
Age at interview: 65
Sex: Male
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How do you feel about the future in terms of living with gout?
I suppose you know - I'll take it as it comes. If it does become chronic, then obviously I'll have to - I'll have to think about changing the medication, because as I say you know there is absolutely - whilst we're - put it the other way round, whilst we've got these sort of, fairly short bursts of discomfort it's not - it's really not an issue, but if it were to become an issue, either develop into arthritis or whatever, then obviously I'd have to take - I'd have to review whether or not to change medication. And certainly I mean I'm not closed minded to that, but we haven’t actually got to that point at the moment. And hopefully we won't. Hopefully.
Other people hoped that recent changes they had made (e.g. starting daily preventative medication) would mean they did not get attacks again. Janette felt that she had ‘beaten’ gout and was sure that she would not get another attack. A few people wondered if their daily medication would continue to be as effective in preventing attacks in the future. Others hoped that new treatments for gout would be developed in the future as alternative options. Several people had no concerns about the future because they believed that their medication would continue to be effective in preventing attacks and long-term damage.
Ian feels that allopurinol has been very effective for him. Gout no longer affects his everyday life.
Ian feels that allopurinol has been very effective for him. Gout no longer affects his everyday life.
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It has more than met my expectation about not getting an attack, I thought it would reduce down the level of attacks or it would help, but it's just eradicated it totally for me, so you know it's beyond my expectation really because it - it has made - it has made the situation a hell of a lot better really. I wouldn't say my life was blighted by gout in any way, shape or form, but it was really inconvenient. And it was something I could certainly do - live without. And now allopurinol has provided that for me.
Some people thought that ongoing preventative medication might be an option for them in the future if their attacks became more frequent or were having a bigger impact on their lives. Arthur was keen to get his gout controlled in the future.
Getting older has made Arthur more determined to get his gout controlled so that it does not impact his leisure and social activities.
Getting older has made Arthur more determined to get his gout controlled so that it does not impact his leisure and social activities.
Age at interview: 63
Sex: Male
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I’m probably more anxious now to try and identify what the problem is, because as I’m getting older, you’ve got less time. Now I don’t…we’ve got a lot we want to pack into our lives, okay. We want to do a lot more travelling. Our social life, you know, we’ve got a lot we want to do. Now I know at the back of my mind, that if I get an attack, that’s knocked on the head, so that impacts quite severely on what we want to achieve. So the long term prospect for me is, that I want to get it sorted because what time I’ve got left in my lifespan, I don’t want to be messing about with gout and trying to sort that out because I’ve got other things I want to do, so it’s a bit frustrating.
Gerald found it hard to think about the future because a future with gout looked difficult. He was only just starting to look ahead, and was hopeful that his doctors would work out how to control his gout and ease the pain. Eddie felt that he had learnt to accept having gout, and did not think that his attacks would stop completely in the future. Paula felt concerned about what would happen if her kidney function got worse, but she was aware that there were drugs available that could help.
Eddie worries about losing his independence if his attacks get more frequent as he gets older.
Eddie worries about losing his independence if his attacks get more frequent as he gets older.
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I got a bit fearful because I thought that the older I get, it could be the more gout I’ve got for some reason or another, and that it would slowly wear me down. Yeah I did worry about that slightly, because you know, coming back to living on your own, one of the things you fear mostly living on your own, you cannot look after yourself, I’ve just had two or three friends who can’t look after themselves and they’ve gone into a home and you know we visit them there and you think, “Oh please not me.” You know, they’re well looked after don’t get me wrong or anything but it’s not like your own home you see, and that’s what’s fearful, that the times comes that I might not be able look after myself if I get too bad. Even though, you know, you have an attack and it goes you don’t know if they’re going to get closer and closer together, so yeah it does worry you slightly.
Some people worried that gout might affect them more in the future in terms of the frequency or intensity of attacks – particularly when relatives or friends with gout had been severely affected by it. In contrast, Dee did not feel worried about the future because she saw her mother managing her gout well as she grew older. A few people wondered whether their children would get gout in the future. Hazel was worried about how to manage gout in the future, including when starting a family. John was glad to know that he had close family who would be around to give him support if he needed it in the future.
Thoughts about long-term effects
Many people did not know that if their uric acid levels remained high, they were at risk of long-term joint damage and other problems, such as kidney stones. Daily medication (e.g. allopurinol) lowers uric acid levels to prevent attacks and long-term problems. Other people worried about developing tophi (small white lumps of uric acid) under their skin if their uric acid levels were high. (For more see ‘
Long-term treatment to lower uric acid and prevent gout attacks and long-term problems’).
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.
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.
Age at interview: 78
Sex: Male
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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.
There are no known unwanted side effects in later life for people who take long-term allopurinol, but many people were worried about this – particularly if they started taking it at a young age. Jonathan wondered about effects on liver function. Others, like Jeff, were not worried about taking daily medication. Some wanted more monitoring to make sure that gout, and/or their medication, were not causing any other problems (for more see ‘
Monitoring gout’).
Sue thought that too much information about potential long-term problems could be frightening. She preferred to ask her GP if she wanted information rather than looking on the internet.
Sam would have liked the opportunity to discuss possible long-term effects with her doctor.
Sam would have liked the opportunity to discuss possible long-term effects with her doctor.
Age at interview: 41
Sex: Female
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She just said that I'd start off on the lower dose, see how I go with that, and if needs be they'd pop me up but there was nothing - there was nothing on what the long term effects then could be. But then I suppose they - every case is different and you know you play it by ear really. But I would have liked to have known a bit more because then I could have asked questions there and then, rather than go on the net and look and think, “Oh my god, am I going to be like this? Is this how it's going to end up? And how long is it going to be” and I think if they were able to set my mind at ease a bit more, rather than have to read up on things.
Other people wanted to know whether having gout meant they were more likely to get other forms of arthritis when they were older. High uric acid levels can lead to long-term joint damage, but with the right treatment this can be prevented for most people. People with gout are sometimes more likely to also have other forms of arthritis, but there is no evidence that gout causes this.
Ian wondered if his gout was caused because his kidneys were less effective at removing uric acid, and whether this could lead to other kidney-related problems later in life.
Last reviewed December 2016
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