Hazel

Age at interview: 32

Brief Outline: Hazel has had gout for around seven years. Many members of her family, in the Philippines, also have gout. Gout has a huge impact on Hazel’s life, including where she lives and works, what she eats and her plans to have a baby.

Background: Hazel is married and lives with her husband. She works as a researcher. Ethnic background/nationality: Asian Filipino.

More about me...

Hazel’s gout began around seven years ago when she was in her early twenties. Many members of her family in the Philippines have gout.
 
Hazel finds swallowing tablets almost impossible so she does not take allopurinol. She takes medication for her diabetes in powder form and melts colchicine tablets in water to take when she has a gout attack. Because of her difficulty with tablets, she tries to find a diet to reduce the number of attacks she has. This can be difficult because of her diabetes. It also makes eating out in restaurants difficult.
 
When she has an attack, Hazel finds it very frightening, because of the pain and the impact it has on her life. Based on this, she has chosen to live in accommodation with no stairs and has stayed in her current job because they know about her condition. She also has to prepare very thoroughly before, for example, flying overseas for work, in case she has an attack. For Hazel, it is not just the gout attack that has an impact, but the side effects of the colchicine, which can last even when the attack has subsided.
 
Hazel would like to have a baby but her GP has told her that there are many gout medications that she could not take during pregnancy. She thinks her gout attacks might be hormone related and fears that hormonal changes during pregnancy would exacerbate it. She thinks that stress can also bring on an attack. When she has an attack she is able to work from home, which is important for Hazel, as she does not want to take time off work. She finds it difficult to explain gout to other people because they assume she is a heavy drinker or that it is an old man’s disease.
 
Hazel has regular checks for her diabetes and asks for her gout to be monitored at the same time and taken just as seriously. She would like health care professionals to take gout more seriously, and to take the background of people into account when considering treatments and advice.

Gout was not surprising or novel in Hazel’s family, so she felt that it was relatively normal to have it herself.

I started having gout about seven years ago now, and I didn't really know - I didn't bring it to the doctor or anything like that. My parents both have gout and they said before that on my father's side it's because my grandmother used to cook a lot of entrails and all of that. And then on my mother's side I don't really know, but they both have it. And so when I was in my early 20s I had it. And it was just a matter of, "Well, they both have it, so I have it. Cannot really escape it."

And then it wasn't that bad, because I have it, I don't know, once in six months, this, this little pain. Cannot really remember so much about it now, because it's progressed quite a bit now. And then a lot of my family have it, so I have a lot of my male cousins that have it. And there's a lot of boys in our family. I don't have a lot of female cousins. So I didn't really notice before that actually I was the only female that had it, apart from my mum, so on the other side. And so on my dad's side, everyone has it. Or maybe one in every family or two in every family. So it was sort of a natural thing for me, just because everyone had it. 

When Hazel notices that an attack is starting, she prepares by making sure she has food and water within easy reach.

So what happens is, when I have an attack, so it doesn't really - okay, most of the time it doesn't really get really, really bad immediately. It's within a few hours. So when I know it's there, the mini gout is there, I start going - and I start migrating to the sofa where I can work and then beside me I have the pitcher of water, I have my, my bread, my food, whatever. It's all there beside me. So I have my mini station already for when it gets bad and I cannot move around. Then it's just beside me. 

Hazel has had several issues related to being a younger woman with gout. She has found it hard to find relevant information and has concerns about gout and pregnancy.

It was happening once a month and then my husband said, "Can you track when you, when you have it?" And then we started looking at it and then he said, "Actually, you know what, you've been having it right around the time before you have your period." And so we're thinking, "Okay, is it then the hormonal imbalance?" Haven't really read any study about that, but then I guess it's because most people that have it are men and those that have it with women are menopaused. So maybe not a lot of people but something to think about maybe, because then we were thinking, "So does that mean that actually when I'm pregnant, because it's the same hormones, I might actually have it more and I can't get the medication. So what are we going to do about that? Am I going to be in a wheelchair because I wouldn't be able to walk or move around?" Just those, those thoughts. Don't really know. I don't have an answer about that. So it happens monthly like that.

Because then the gout medication, for example, is not ideal for women who want to have children. It's either you risk having gout or you don't have children. And there is no option except you stop taking any medication related to gout, at least that I know of. So that's the option we're taking, except that I keep on having attacks and when I have an attack I have to take the medication. So let’s say, "What if I'm one month pregnant, then I get a gout attack, what do I do?" And that's why for us we're using contraception currently as to make sure that I don't conceive and then take something that, you know. So we want - that's why we wanted to have the four month - this is our own sort of protocol because I don't know of any other. So we say, "Okay, four months without it means probably you're safe enough. We then remove the contraception. You then stop eating whatever you need to stop eating for - until you have the baby so that you don't have an attack, because we know that your levels will be low once you get pregnant, because then you don't want an accident wherein, didn't know that I was pregnant already, took the colchicine or the mefenamic acid, then it would have effects”. So that there's not that option. So it's just you deal with the pain when it's there. I think someone said when I was – I think one of the doctors said that, you know, "If it really gets worse and you're already pregnant, then we can inject something for the pain." That's their solution, but it's not dealing with the problem really. It's worst case scenario, "We, we inject you with something." That's it. 

So I mean that, I think, is a factor because of my age, because then I think most people that have been studied before are elderly or are men, none of which have children, none of which want to get pregnant. It doesn’t really, as far as I know, doesn’t affect the fertility of the man so it's not really part of the discussion but, I'm sure I'm not alone. I'm sure there are other women there and okay, if there are women in their 40s who are having gout now, there are women in their 40s who are actually even more desperate to have a baby and they're very likely to be under a salad of medication as well. And then so this should be part of the discussion, I think, because then are we supposed to not have children just because we have gout? Or are we supposed to endure the pain of gout for nine months because we want to actually have children? It's not just nine months, because when you're breastfeeding you can't have it as well, according to the doctor. So it's a sort of - it's, it's one, one concern for me, because then I'm having to sort of delay things. I, I've delayed it quite a bit now, just because of the gout. So I mean it's, it's another thing that, that gout has affected and it's a pretty major thing, I think. So, yeah.

Colchicine often causes side effects of diarrhoea and sickness, but getting to the toilet quickly is difficult for Hazel when she has attacks in her feet.

At that point wherein, you're almost going to get better after you've done your - I've done two rounds of the colchicine eight a day, or six a day or whatever, then when, when the diarrhoea will start. Diarrhoea starts but actually you're still much in pain. How do you run to the toilet? Because you really, really, really have to go. That's what colchicine does. You, you run and in pain and, and you just collapse there and, and you deal with it, or you just stay there for a long time, because then it might come again, don't know how I can walk back to the toilet, sort of thing.

Hazel said her doctors are unsympathetic about the difficulty she has swallowing pills, and the impact this has on treating gout.

I have the pill swallowing problem. I haven't found doctors that have been really sympathetic. They say, "Well then, just melt the pill in water," which is what I'm doing now because they’re saying, for example, for statins - my cholesterol is not good, related to the diabetes. And they - and I tell the doctor, "Look, see my sugar is getting better because I'm taking the, the sachet, the powdered stuff”. I'm not taking the pill obviously because I really - I gag when I – I’ve gagged with colchicine, and colchicine is the size of an aspirin. I have to melt my colchicine. So what about those pills that are this size, obviously I cannot. So they say, "Oh, then melt it." 

But the thing is, you know, it's - okay, I'm in a restaurant, I have to take the pill. "Err waiter, can I get some warm water and an extra glass and a teaspoon, please?" in front of everyone “because I need to melt my pill”. So that's what - and if they say, "Well, it's so expensive in NHS," well I think the thing is I say, "Well, my taxes go there, and actually I've computed I'm still paying for that properly with my taxes." But then obviously that argument doesn’t win. So the thing is just for me it's, it's just good to - for some doctors to at least recognise that actually this person is taking different sorts of, of medication, you know. It's part, I mean because then it's either my cholesterol still is very bad, it is still very bad because I still don't take statins, or, or they just give me something that I can actually take and then get on with my life. And they haven't done that. And they don't have an answer to me when I say, "Well, I really couldn't swallow the pill. I need something," and then they say, "Well, melt it." That's their best answer. So for gout it's the same. It's, "Melt the pill."