Methotrexate – what do patients need to know, and when?
Published on 29 October 2012
Essential treatment or a toxic anti-cancer drug? Our new research aims to improve the way patients find out the facts about methotrexate, an important but much-maligned medication.
Despite the advent of biological drugs for rheumatoid and other forms of inflammatory arthritis over the past decade, the drug that remains the mainstay of treatment for the vast majority of patients is methotrexate.
It’s a drug that can work extremely effectively in people with mild to moderate rheumatoid arthritis, controlling symptoms over long periods of time and working well in combination with other disease-modifying anti-rheumatic drugs (DMARDs) and biologics such as anti-TNF therapies.
While some people can develop unacceptable side-effects and others find it ineffective over time, methotrexate has remained an important part of the treatment regime. And yet…no other drugs, not anti-TNF therapy, not the B-cell inhibiting drug rituximab, not even steroids, elicit such strong reactions among patients as methotrexate. To put it bluntly, many people are terrified of it, largely because of its reputation as an anti-cancer drug.
Margaret Turner, whose rheumatoid arthritis was diagnosed 15 years ago, was told about methotrexate by her consultant rheumatologist who she feelingly describes as lacking in ‘relationship skills’. “I was told I was going on it as steroids and sulphasalazine hadn’t worked, and that was more or less it. It was scary because I knew it was associated with conditions like cancer, and the consultant didn’t exactly reduce my anxiety.”
Sandra Robinson, senior rheumatology research nurse at North Tyneside Hospital in North Shields, who counsels patients about to go on methotrexate, says Margaret’s concerns about going on the drug are typical.
“Methotrexate generates a real fear factor,” she says. “The majority of patients don’t know anything about methotrexate and they’ll go onto the internet and start finding out about it, that it can be toxic and it’s a drug used to treat cancer, and they’ll ask us things like: ’Is rheumatoid arthritis a form of cancer then and am I going to die?’ Relatives start researching it too, and so a kind of cycle of fear is created.
“It’s important that patients are given all the information they need. Yes, methotrexate is used to treat cancer but we use it in much smaller doses in rheumatology, and it also works really, really well.”
Rheumatologist Dr David Walker, also based at North Tyneside Hospital and Newcastle University, who has been involved in in developing patient education material for Arthritis Research UK for many years, adds: “It’s important before starting a drug for the patient to understand what the expected benefit is, how that will manifest, and to know the risks, and this should be part of the decision to prescribe or take the medication. It’s especially important for drugs such as methotrexate, where the effect is delayed, and side-effects are anticipated and monitored for.”
Currently, patients being offered methotrexate are told about the drug and its pros and cons by their rheumatologist or specialist rheumatology nurses in the rheumatology clinic.
For many patients, a session with a rheumatology nurse and a read-through of Arthritis Research UK’s drug sheet about methotrexate is sufficient to allay their fears. However, there is evidence that not all nurses giving the information, and counselling patients about the drug’s use, are particularly confident about doing so. Little formal education on how to counsel patients is given; even an experienced research nurse as Sandra Robinson has never had any training.
That’s why Arthritis Research UK has awarded a 12-month educational project grant to Dr Walker and Sandra Robinson and colleagues to identify the gaps in patients’ knowledge and to find out more about this lack of confidence in nurses who give out the information. The aim is to develop a new educational package aimed at nurses, possibly an app, or similarly handy available tool.
Sandra Robinson’s vast experience has told her that it’s not just about the quality and amount of information that nurses give to patients, but the timing of it that is crucial.
“When you first counsel people about it, you tend to have patients who have just been diagnosed, who have to face the fact that they’re going to be on drugs for the rest of their lives. They’re often shell-shocked, and don’t ask a lot of questions. That tends to come later,” she says. “So they go home and start researching into it, and finding out for themselves. There needs to be better follow-up and we need to think about how we do that.”
Margaret Turner agrees. “Timing of counselling is very important,” she says. “Being told you have rheumatoid arthritis is a grieving process, and if you can take on the psychological aspects of the condition you’re then more likely to deal with the physical side.”
Previous Arthritis Research UK-funded work has shown the importance of effective patient information in encouraging people taking the drugs properly. Adherence is improved when people understand the reasons for taking them. Other research on people with ankylosing spondyitis confirmed that patients want to receive information at certain times – at times of changes in their condition, for example. This issue of timing is one of the aspects that the Newcastle team will be looking at.
It’s important that newly-diagnosed arthritis patients receive the best information about all drugs but Sandra believes that methotrexate is a special case. ”It’s very widely used, and, for example, with anti-TNF therapy patients get a lot more support from their local hospital, they have to meet certain treatment scores, go to out-patients for their infusions, and have more access to doctors and nurses,” she says. “Whereas patients on methotrexate, who are monitored by their GPs, don’t necessarily go back into hospital, except to see their rheumatologist every six months.”
As part of the study, the team will develop and distribute a national questionnaire, asking nurses whether they have received any training, how they would respond to a variety of scenarios; for example, what they would tell a patient with a chest infection, or how they would counsel patients about issues such as vaccinations and alcohol use. Another strand of work will involve semi-structured interviews with nurses of varying levels of experience, plus a pilot study, videoing consultations of counselling sessions, to learn more about what makes an effective interaction between nurse and patient. The outcome should mean patients get the best information to take their drugs safely and effectively.
Margaret Turner, who is now 61, still takes methotrexate with the anti-TNF drug etanercept, as her condition is severe and has fluctuated over the years. Her experience of being told about etanercept was very different to the earlier methotrexate experience, but by then she had moved to a different hospital, where she says she felt more empowered.
She adds: “The rheumatologist was able to assuage my fears about drugs, and there are specialist nurses whom I could phone for advice and help. It was quite different.”
• Arthritis Research UK’s drug sheet on methotrexate and booklet on rheumatoid arthritis are available to read or download at www.arthritisresearchuk.org or by calling 0300 790 0400
• For more information call the National Rheumatoid Arthritis Society (nras)
helpline 0800 298 7650 or go to www.nras.org.uk
Methotrexate fact box
• Methotrexate has been used in high doses to treat cancer since the 1950s, and has been widely used as the ‘gold-standard’ for mild to moderate rheumatoid and other forms of inflammatory arthritis for the past 40 years.
• Methotrexate is a type of drug known as a disease-modifying anti-rheumatic drug (DMARD). It is available either as injection or tablet form.
• It works by damping down the immune system rather than simply treating symptoms, so people taking it are more prone to developing infections.
• Side-effects can include sickness, diarrhoea, hair loss and skin rashes, but many people tolerate the drug well. Taking folic acid reduces the likelihood of side-effects.
• People taking the drug are regularly monitored by their GP and have monthly blood tests.