Living with multiple medicines: Starting and changing medicines
Listen to patients and health professionals talk about the challenges of starting and changing multiple medicines.
For some of the people we spoke to starting medicines was relatively straightforward and easy to navigate: they started a new medicine as the need arose, it was easy to take, worked well and had no side effects.
Some start their medicines ‘one at a time’, which helps them become accustomed to the medicines. For others, starting medicines is a complex and confusing process with disappointments that require many changes to the medicines to find the right combination that works for them. Some people start all their medicines at once and need only a minor adjustment period, while for others, the process is more complicated.
Different feelings about starting a medicine
Some people felt relief that there was something that could be done when they started a medicine, because they had been unwell or in pain, in some cases for many years.
Jan had a number of extremely disruptive episodes of illness. It was a relief to begin medication that controlled these.
Don’s healthcare providers suspect that he has Parkinson’s disease. He hopes he can be treated for the condition soon, whatever the eventual diagnosis.
The potential impact of a new medicine
Starting medication for the first time can have a dramatic effect. Many people describe how surprised they were at how much of a difference medication could make, particularly if they had adapted to feeling unwell or being in pain and did not realise how bad they felt.
Diana describes one of her medicines as ‘my little miracle’ as she is no longer chronically tired.
Glenn had never heard of adult ADHD when he was diagnosed with it. He was amazed at the difference medication made.
Starting a medicine with serious side effects
Starting medicines with serious side effects is a big decision. Some people have to decide whether or not to start a medicine with known, serious side effects.
Lyn’s specialist made it clear that the decision was hers whether to start a medicine that could have serious side effects. She was able to start it when she was ready.
Complex medication regimens
For people with complex conditions and/or regimens, starting or changing a medicine can be complicated. Some people also take medicines that involve alternating doses and it can be a lot of work keeping track of these.
Peter S went to hospital and had extensive tests to determine how best to manage his heart condition. Subsequent diagnoses have required cautious decision making regarding his treatment.
Some people use certain strategies to help with the complexity of changing regimens. They find this eases the burden and confusion of change and helps to prevent them from making mistakes.
When she first started taking medication for depression, Jane went away with her husband to give her space to become accustomed to it. She was admitted to hospital at a later time to learn how to manage a new and complex regimen.
Everyone we spoke to is mindful of how other, short-term health conditions can affect the medicines they use. People with multiple and complex conditions need to be particularly careful, for example becoming ill or having surgery that might have a serious impact on the way their medicines work. Taking short-term medicines to treat an illness often has to be introduced into their regimen with care. They may have to stop taking their medicines for a time.
Emma finds it difficult to take her medicines when she has a gastric illness. She finds it really hard to stop taking them for the time she is sick because of the high number of medicines she takes.
Glenn finds that he can accommodate adding short-term medicines into his usual regimen if they can be taken at the same time. Otherwise, he is likely to forget to take a short-term medicine.
Emma has found it challenging to take her medicines when she is about to have surgery. She has since discussed this with an anaesthetist and now knows what to do with her current medicines.
Having a complex medication regimen does mean that many people have become ‘experts’ at managing their medicines after a number of years. They are particularly adept at managing change in their regimen, being familiar with the services that are available to them and having learned many techniques to deal with change.
Peter S has a good relationship with his pharmacist, which helps when his medicines change. He has to be careful when doctors other than his usual GP or specialists prescribe something new.
The need to change medicines
Trialling different medicines because of side effects, allergies or ineffectiveness can take a toll. For some people, it required a great deal of effort to find the right combination of medicines to manage their condition, symptoms or pain without putting themselves in danger of interactions between their different medicines.
Micaela needed to try a number of medicines to treat Crohn’s disease before finding one that she was not allergic to, that worked and did not cause side effects.
Karen needed to try many medicines and combinations of medicines for pain relief. Nothing worked well for very long. She has since found a compromise between pain control and being able to function.
Niall needed the dose of several medicines to be adjusted before he and his doctors started to see some real improvement in his blood test results. A new GP was particularly proactive in this respect.
Some people found it hard to convince their prescribing doctor that they had a problem or needed to change a current medicine. They felt frustrated at having to ‘jump hurdles’ and cope with pain or discomfort before they could receive the most effective treatment. Some people who have tried many different medicines before finding one that works report they then had to be quite assertive to stay on that medicine. This is particularly the case for ‘older’ medicines for which there are newer ones that have superseded previous medicines as first-line treatment. Some of the people we spoke to who took medication for depression experienced this.
Diana feels that she was disadvantaged with her treatment for severe period pain because of her young age.
Glenn tried a number of medicines before seeing a psychiatrist, who prescribed the appropriate medicine. He also reassured Glenn that he was right in thinking previous medicines were not effective.
Generic medicines
Some people describe how their pharmacist asks them if they want to change their medicine to the generic brand when they are having a prescription filled. Generic brands become available when the patent for a medicine has expired and other pharmaceutical companies can legally produce and sell them. Most people are able to make this change, as the active ingredient is the same. However, some people react to other ingredients in the medicine (excipients), such as those used in fillers or coatings, or find the physical differences with the new brand more problematic to manage.
Emma tried generic medicines, but she had reactions to one of them and had difficulty opening the package and swallowing the tablet of another one.
Reducing the number of medicines taken
It was important to everyone we spoke to that they were taking as few medicines as they needed (something doctors call ‘rationalising’ medicines). Some people are actively trying to reduce the number of medicines they are taking. Everyone we spoke to is keen to do this wherever possible, provided they can maintain a reasonable level of health and still be able to do all the things they want and need to do.
- Peter H has recently been able to stop one and reduce another of his medicines for high blood pressure.
Lyn reduces her medicines where she can because she is concerned about becoming dependent on them. She has found that there are some medicines she cannot do without.
Sometimes people have been able to reduce the number of medicines they take because their health has improved. Several people we spoke to were able to reduce their medicines because they had made positive changes to their diet or the amount of exercise they did. Some of these people have also lost weight, which meant they could reduce the dose of, or otherwise change, some of their medicines.
Mary’s endocrinologist agreed that she could stop insulin because she had lost a significant amount of weight. Her blood pressure and cholesterol levels have also greatly improved and she has been able to reduce the doses of a number of other medicines.
Views of health professionals
There can be very good reasons to change medicines, which doctors will assess with their patients on a case-by-case basis. The doctors we spoke to are also aware of the confusion that changing medicines can cause and will try to minimise unnecessary changes wherever possible.
Associate Professor Sarah Hilmer, clinical pharmacologist and geriatrician, explains that advances in medical science and people’s needs change over time, which means their medicines may also need to change.
Dr Elisabeth Wearne, GP, believes that generic brands of medicines can confuse some patients. She feels that communication between patients, their GP and their pharmacist is important to reduce this confusion.
Dr Susan Connelly, geriatrician, describes how the considerations regarding medicines for older patients can be very different from those for younger patients. Medication may need to change with increasing age.
What people also talk about
The Living with multiple medicines project was developed in collaboration with
