Long-term use of drugs for rheumatoid arthritis

Most people we talked to had been taking drugs for their rheumatoid arthritis (RA), in various combinations, for several years. Some had got used to taking regular medication describing it as no big deal and saw it as a way of life.

Having taken medication for twelve years she saw it as ‘a way of life.

Age at interview 21

Gender Female

Age at diagnosis 12

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And how do you feel about taking sort of the drugs long term?
It’s not a problem for me. I’m used to it but also I’ve, I’ve grown to like them because they’re good for me. It’s annoying when you have to keep, keep an eye on them and like I say when you’re going on holiday you have to make sure that you’ve got enough. But it’s just a way of life, it’s a part of my life and I find it strange to think of going to bed and not taking any tablets. That to me would be the strangest thing in the world because that’s what I do. I get ready, I sit down, I get my tablets ready, I get my water ready and I did that last thing of all. And then I put my splints on and it’s just so much part of who, my routine now that to not do it would be alien to me.
Do, you don’t ever forget?
No. Never. Never forget. [Laughs] Forgotten probably once or twice in about 12 years and you know about it when you forget. So, you learn not to. But they’re right, they’re there by the side of my bed so it would be very difficult to forget them.

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Most people were convinced that the benefits of taking medication outweighed the risks. One woman said, If its giving me my life back its got to be worth it.

Some people had already suffered the side effects of drugs and so were particularly concerned about their long-term use. One woman felt she was between the devil and the deep blue sea. She knew that steroids had caused problems such as her osteoporosis, but said that if she didn’t take drugs she couldn’t move.

Takes a ‘cocktail of drugs, would like to stop taking steroids but knows they help her mobility.

Age at interview 53

Gender Female

Age at diagnosis 30

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Well I don’t like it and I’m, I’ve, I would like to be able to get off the steroids altogether because I’ve been on steroids now since ’84 and it’s made my skin thin and it’s, you know, it’s given me osteoporosis and I don’t think I’m going to be able to get off them completely. I’m down to 3mg a day which is a very low dose but I’m also still taking hydroxychloroquine and Vioxx (now withdrawn) as well as the anti-TNF and the methotrexate so it’s a bit of a cocktail. And you know that, you know long term these drugs cannot be they cannot be good for you but what can you do? I’m between the devil and the deep blue sea. If I don’t take them I can’t move. So you just have to take them and hope that you know leading as healthy a life as you can in other respects is going to have some mitigating effect.

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People often felt reassured because they were being monitored; they had regular blood tests and urine tests to make sure that the drugs weren’t causing long-term complications (see Regular monitoring and other diagnostic tests). But others were keen to reduce the dose of certain drugs or to stop them as soon as possible.

After about 8 years of taking steroids and penicillamine she decided to stop and slowly did so…

Age at interview 52

Gender Female

Age at diagnosis 28

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I’ve had quite a lot of pills but again I got fed up of taking those, so I went to my doctor and said ‘I don’t want to take these anymore, I want to self manage and I want do it how I want to do it and if I want painkillers, I’ll take them and I’ll buy them over the counter. And that’s basically what I’ve tried to do.

And I was on Penicillamine for a very long time and steroids which made you go [demonstrates bloated face] which I hated, absolutely hated but I was on those for quite a long time and again one day, I thought, ‘I’m not doing this anymore. So they agreed I could come off of them;

Did it take you a while to sort of [stop taking the steroids?]

It did. Yes. I think it must have taken about a year, I think to actually come off of them completely and that was about 4 or 5 years ago now.

Did you know a big difference as you were reducing them?

I did to start with and then as the, the time went on and no, it was, it was all right;

And was that like more pain?

There is more pain as you, yes, yeah, more pain. But I just take some painkillers for that which I’d rather do because I used to find that I was in a fugg the whole time, when I was taking the pills. I just could not make a decision, as if theres a blanket wrapped round your brain and you had to fight to get anything out of it. And now it’s much better, much better without them;

And likewise with the Pen, Penicillamine?

Penicillamine. Yes, we came off of that slowly as well ‘cos that apparently could have been quite a dangerous drug. I used to go every six weeks for a blood test and a water test to make sure that everything was all right and it wasn’t killing off the things that it could kill off. But at the time it worked so therefore you are grateful for taking it but after a while these things just, you get immune to them so you think, why should I, you know, carry on taking these? It’s not actually doing any good to me.

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Most people took drugs at regular intervals. Some had to take them once or twice a day, others needed them more often. Some took methotrexate, which is only taken once a week. People sometimes forgot to take their tablets, particularly when on holiday, and said they suffered pain and reduced mobility as a result.

People had developed various methods to help them to remember to take their drugs. Some used special tablet boxes, which are divided and marked for each day of the week. The boxes helped those who found it hard to remember if they had taken their tablets or not. However, one woman said that sometimes her smaller pills got caught and crushed in the mechanism of her tablet box. She then had to work out which one had got crushed.

She counts a week’s supply of tablets into a medicine cup to help her remember whether or not she…

Age at interview 52

Gender Female

Age at diagnosis 47

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The painkillers I would say, I took painkillers yesterday, the anti-inflammatory I take every other day, not every day. And the other one I take each night every night I take them, the lefludomide I take every night, so.

Do you, the fact that you’re supposed to take them regularly , is there anything that you do to sort of remind you to take them or do you forget to take them?

Oh yeah I forget, I’ve forgotten before today so now what I do now is I count, I put them out on a Sunday and I have them in a little plastic medicine cup and I put seven in and I know that on Tuesday you know there should be five there, and if theres six I haven’t took one last night, that’s how I do it now. But I have forgotten, oh yeah, I’ve took them twice before today, but they said in the leaflet that that’s not a problem to do that you know, so yeah I do have them separately in my little cup.

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Uses a special tablet box to help her remember to take her drugs regularly.

Age at interview 37

Gender Female

Age at diagnosis 19

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It becomes routine, but the big thing that I did do was buy like these sort of tablet boxes where you get like, they’re supposed to be for seven days, but I get fourteen days out of them cos I only take my major tablets twice a day, and I make up say six weeks at a time and then you know for definite because they’ve got the days of the week on, because a lot of things because they’re habit you don’t always realise when you’ve taken them, you just do it and then you think ‘Have I taken my tablets?’, well you can go back and check in the box, so that’s been like a big help to me, cos you know for years I used to maybe take four different tablets on a morning, so you’d be going through four different bottles every morning where now I only do that once every six weeks and then they’re all made up in little containers.

So I find that much better and it does, you know the only time when I’ve forgotten my steroids was when I was on holiday and because the routines different I forgot to take them on the morning, but by the afternoon I knew cos my neck goes stiff, I start like to go a bit sort of dizzy and just feel really unwell, so once I get them into my system and then it’s a couple of hours before I start feeling normal again, but you know mainly, because my routines more or less the same I do remember them. So I’m not, you know I don’t forget and pain killers I don’t forget [laughs] because your pain is always there to remind you really for them. I do try to keep them to a minimum but sometimes you just have to take them and you know like my pain’s less now because of my knees being replaced and everything.

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