Choosing treatments and taking part in clinical trials
It is not unusual for people diagnosed with RA to try different treatments in order to find the right one that will help control the condition, alleviate symptoms and also minimised some of the side effects of the drugs. It can take some time finding the drug treatment that works for you. Also, when making treatment decisions doctors need to consider patients' views, knowledge, circumstances, hopes and fears. Future plans for a pregnancy are important, for example, because some drugs can affect the ability to conceive and may affect the baby (see 'Pregnancy and breastfeeding').
Some treatments are only appropriate at certain stages of the illness. One woman had been told that a cortisone drip would not be appropriate for her because her illness had 'burnt itself out'. Some people decided that the symptom relief from joint injections did not outweigh the pain of the injection. For others the short-term benefits of steroid pulses/injections were not enough to have them.
Some people we talked to had great faith in their doctors. They assumed that the rheumatologist knew what was best for them, and they didn't want to get involved in shared decision making. Although clinicians may be experts in their area, several people particularly young adults, felt that they were experts themselves in RA having lived with it for many years and they were frustrated when people didn't listen to them.
Some people, however, were aware of uncertainty in medicine and wanted to take an active role in planning their own treatment. They chose to ask questions and find out as much as possible (see 'Talking about - Finding information about RA'). One woman, for example, said that since different health professionals gave her different answers to the same question it was important to weigh them up.
Some people chose to stop taking certain medication with or without agreement from their doctor. Several were unhappy to persevere, as advised, with medication that caused unpleasant side effects.
Some people were critical of consultations they had had in the past with their doctors. They hadn't been offered a choice of treatment and would have liked to have known more about the side effects of various drugs. Others thought that no alternative treatment options existed.
Most people, however, spoke highly of more recent consultations. Their rheumatologists had discussed the risks and benefits of different treatments. One woman suggested that today it is almost seen as a patient's duty to ask questions and get involved in treatment decisions.
A woman who had been treated privately said that her consultant always suggested treatments that would fit in with her lifestyle. A man who liked to drink whisky most days had been offered sulfasalazine instead of methotrexate (see 'Talking about - Disease Modifying Anti-Rheumatic Drugs (DMARDs)).
One woman had waited three to six months to see her consultant at the hospital but was 'fobbed off' with a registrar. She felt upset because she wanted to discuss her medication with her consultant. She wrote to him about her concerns and saw him soon afterwards.
Choice about whether to have an operation was also important (see 'Talking about - Surgery - introduction'). One woman, having private treatment, chose surgeons recommended to her who were specialists in a particular joint. Others had tried strengthening exercises before making a decision and this had sometimes prevented the need for surgery.
Participating in clinical trials
Some of the people we talked to had been invited to take part in clinical trials of various drugs, and while most of them accepted, others refused for several reasons which include being too ill, doubting the benefits of the new drugs, being 'wary' of new 'untested' drugs and disliking the idea of being used as a 'guinea pig'. Moreover, one woman was doing well on her current medication and saw no need to take part. The reason for another woman to declined participation was that she was already being monitored as part of a trial of a new type of hip replacement.
Those who accepted the invitation, were pleased to take part in clinical trials especially if the new drugs might help them and others too. One woman said that she was happy to take part because she had got to the stage where there was 'nothing else' to try.
One young woman had taken part in a trial of adalimumab (commercial name Humira). Her consultant had told her about the possible long-term risks to health but she was keen to take part in the trial because she wanted to find something that would relieve her symptoms.
Two people had taken part in a trial of infliximab anti-TNF medication. One man felt no beneficial or harmful effects and thought he had been on the placebo for a year. One woman did it because her 'disease was out of control' and found it very helpful. She was upset at the end of the trial because no one would pay for her to continue taking the drugs. After a battle of six months the drug company agreed to give her the drug on a 'compassionate basis' (see 'Talking about - Biologic treatments: anti-TNF and B-cell therapy').
Another woman had taken part in a trial of anti-TNF medication injected directly into her joint. A few people trialled supplements including cod liver oil capsules, aloe vera juice and evening primrose oil.
People described the 'special treatment' they received in clinical trials. A woman in a trial of cannabis for inflammatory pain received very good care and plenty of contact with health professionals.
The trial participants would have liked to have known the results of the trials they took part in.
