Carole

Age at interview: 64

Brief Outline: Carole chose to manage her gout for about 10 years by monitoring her diet, and took naproxen when she had an attack. In 2012, she decided to try preventative medication, and now takes 300mg allopurinol every day.

Background: Carole is divorced and lives alone. She is now retired, and previously worked as a Civil Servant. Ethnic background/nationality: White English.

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Carole was in her early 50s when she suddenly woke up in the night with severe pain in one of her big toes. Her GP sent her to the hospital where they said she had got gout. Carole had heard of gout, but she did not know much about it, or know that it was a form of arthritis. She thought that possibly it was to do with older men who liked drinking alcohol. Carole was not prescribed any medication at the hospital but she was advised to visit her GP.

Carole does not like taking tablets so she wanted to try and avoid long-term medication. She asked her GP if she could try and control her gout by watching what she ate. Her GP agreed that Carole could do what she was comfortable with. She was later prescribed naproxen to deal with the attacks as and when they occurred.

Carole believes that watching her diet worked reasonably well for a period of time. It did not stop her from having attacks, and the attacks did have an impact on her life, but she felt that she was in control. However, after about 10 years, Carole’s flare ups became more frequent.  

When Carole got an attack, the pain was excruciating. She often could not walk or drive the car, and occasionally she was not able to go to work. She found it very wearing because she could not sleep or have the bedclothes on the affected joint because of the pain. Carole enjoys competing in agility competitions with her dogs, and when she had attacks, she could not pursue that hobby until the pain had gone.

As the years went by, Carole believed that she got better at recognising that she was going to have a flare up and starting her anti-inflammatories quickly. Nonetheless, she came round to thinking that she needed to do something more about her gout than simply trying to manage her diet and dealing with episodes when they occurred.

Carole went to see her doctor last year, and agreed to start on a low dose of allopurinol. She did not see her regular doctor, and the doctor she saw told her that she had chronic kidney disease. Carole was already aware that her kidney function was just under the normal range and had discussed this with the doctor she usually saw. However, on this occasion, the test showed that her kidney function was much lower so the doctor would not prescribe anti-inflammatories for Carole to take when she started the allopurinol. Carole ended up with gout in five different joints in her body at the same time. She was eventually allowed to have the anti-inflammatories, but was very upset by the experience. Carole’s recent tests show that her kidney function has returned to the level it was previously (just under the normal range). 

After she started on allopurinol, Carole was still getting attacks so her GP upped her dose from 200mg to 300mg. She had a blood test 6 weeks later and was told that her uric acid levels were now within the target range, and lower than before she started taking the allopurinol. She has not had an attack since. Carole feels positive about the future, but looking back, she believes that maybe she should have started taking allopurinol sooner. 

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.

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.

Carole appreciated a friend bringing her dinner round because it was hard for her to cook a meal when she had attacks in her feet or ankles.

Because I live on my own, it's, it's stopped me doing things, but, other than that, I've managed in the main to sort of eat. Just, you know, just carry on. Or I've, you know, I haven't gone out for a daily walk with the dogs or something like that. And I think I can remember an instance where a friend of mine brought me a dinner round on a plate once [laughter]. She doesn't live too far away, and that just saved me going in the kitchen and cooking because, as I say, if it's - if I've got it in my ankle, just even struggling into the kitchen to make a drink or cook something, it just hurts to get there and it hurts to get back again [laughter].

Carole says being diagnosed is not the end of the world. She does not like taking tablets, but now wishes she had started daily preventative medication sooner.

What I would say, it's not the end of the world and you can still lead, you know, a fairly normal life. It's a matter of just learning to know when - what, you know, depending upon what, what route you go down. As I say, like me, I left it a long time and got to know, as I say, as time wore on, these instances, you know, "Why is that bit of me hurting? Ha, ha, I know what it is." And that takes a while, I think, sort of to, to understand or to, to get to recognise. But as I say, one, you know, don't be too - don't be offended by, by it. It's not - you've got arthritis, basically. It's just this, this word that people associate with sort of, you know, rotund men and obviously I'm not one of those. As I say, you know, you must do what's best for you, you know, subject to whatever your GP advises. But I've been down both routes, really. I've tried, I've tried the watching what I eat and yes, it worked to a degree. And now I'm taking the medication.

But I suppose, because of the way I am, I am so anti taking things that probably it was a case of me coming round to accepting that I didn't have any other options. But, as I say, it's always easier to be wiser after the event. But if there was anybody, as I say, like me watching, then what I would say is obviously do what you feel best doing, but maybe if you find, as I say, that you're getting frequent attacks, don't perhaps be quite so adamant as I was to just carry on down that sort of, "Oh, I'll watch what I'm eating," because maybe the medication would have been a better option a bit sooner in my, my experience.