Rheumatoid Arthritis
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'.
Having taken medication for twelve years she saw it as 'a way of life'.
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.
Most people were convinced that the benefits of taking medication outweighed the risks. One woman said, 'If it's giving me my life back it's 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.
Takes a 'cocktail' of drugs, would like to stop taking steroids but knows they help her mobility.
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 I'm down to 3mg a day which is a very low dose but I'm also still taking hydroxychloroquine and Vioxx (now withdrawn) as well as the anti-TNF and the methotrexate so it's a bit of a cocktail.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.
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 of RA 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...
After about 8 years of taking steroids and penicillamine she decided to stop and slowly did so...
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 there's 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.
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.
Last reviewed August 2016.
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