Problems with multiple medicines (part 1)
Listen to patients taking multiple medicines talk about where they’ve experienced undesirable outcomes from their medications, such as side effects & interactions, & how they have managed these problems
There are many things that can happen with medicines that are undesirable. Most people we spoke to experience very few problems with their medicines, or none whatsoever. However, some people have experienced side effects, which sometimes have had a long-term impact or were worse than the symptoms of their condition the medicine was intended to treat.
Other problems include difficulties taking them (such as large tablets); medicines that do not work as well as they should; problems accessing pharmacies or doctors to prescribe medicines; allergies; interactions between medicines and medicines that make another condition worse; and dependency on a medicine (sometimes described as ‘addiction’). Importantly, most people are able to find ways to manage or resolve these problems.
Side effects
Experiencing side effects from their medicines is the most common problem that the people we spoke to talked about. A number of people said they have not experienced any side effects, or only very mild or rare side effects that they were not bothered by them.
Some people feel that the benefits of the medication outweigh the side effects; for example, certain medications for arthritis make some people feel nauseous, but they feel it is worth it because they are more mobile and in less pain. Sometimes side effects only occur when people first start taking a medicine and, provided they continue to take them, these side effects disappear after a while.
Peter H has experienced a side effect from just one of his medicines and only once, which he attributes to an activity that he does not usually pursue.
The doses that Mia is on for her medicines mean that side effects are a rare and temporary occurrence.
Others have experienced considerable side effects that were both physically uncomfortable and painful and inconvenient and disruptive to their lives. Some side effects can impact on how people see themselves as a person, such as significant weight gain for people who have always maintained a healthy weight.
Side effects can be especially distressing when they are unexpected. A side effect can be due to just one of their medicines, or they can experience several side effects from several medicines or from the cumulative effect of several medicines.
Glenn has experienced many side effects from his medicines, including some that came as a shock and others that have been extremely disruptive to his work.
Gordon feels that his medicines ‘build up’ in his system and make him unwell. His GP agrees that seems to be the case, but none of his doctors can explain what is happening.
Linda stopped one medicine as soon as she noticed a particularly distressing side effect.
Sometimes the side effect can be worse than the symptom or the condition itself. People who have been in this situation often find it difficult to decide whether they should take the medicine or not. Sometimes it is possible to reach a ‘compromise’ between symptoms and side effects.
Micaela was on steroids and methotrexate for about ten years, which had several side effects and, because they suppressed the immune system, she picked up illnesses often, including some that were unusual in adults.
Karen experienced such a severe side effect from one of the first pain relievers she tried that she reached a compromise between managing the pain enough to be able to do things and minimising the side effects.
Diana felt she wasn’t really living when she was on high doses of a particular antidepressant.
Some side effects can have long-term or permanent outcomes. This is something that concerns many of the people we spoke to: the possibility of long-term side effects that are as yet unknown worries many people.
Very few people we spoke to had actually experienced this for themselves. However, one participant described coming to a compromise with her doctor about ceasing a medicine that treated her breast cancer. She did not want to stop it when he advised her to, because of her fear that the cancer would recur. She now suspects that she acquired permanent peripheral neuropathy as a side effect of taking the medicine for longer than her doctor recommended.
Sue needed to take a medicine for which the long-term side effects made the impact of her other conditions worse.
People have found ways to manage many side effects of their medicines. For example, constipation as a side effect is experienced by many people we spoke to, many of whom say they have learned to manage this by increasing their intake of fibre. Sometimes it is possible to take their medicine at a different time of the day, which reduces the side effect or stops it altogether.
One person we spoke to did not realise until she had a home visit with a nurse that she should have been taking one medicine after food. When she started taking the medicine after breakfast, the day-long stomach pains she was having were resolved immediately.
Other people are able to temporarily stop a medicine if they have a ‘one-off’ event planned and want to avoid a particularly unpleasant side effect. Some people need to be prescribed additional medicines to manage side effects that are unbearable and have not reduced over time.
Karen manages the constipation caused by her medicines with a high-fibre diet and supplements when she is eating away from home, particularly during times such as Christmas that go for several days.
Because of the number of medicines they take, when some people experienced a side effect for the first time they weren’t sure which medicine was the cause. Sometimes they could not be certain that it was a side effect and were worried that it was a new symptom, a sign that one of their conditions was getting worse or they had developed a new one. This can be very frightening, particularly if they are home alone or it occurs at night when they cannot visit a doctor or pharmacist.
Micaela sometimes finds it difficult to tell which are side effects of her medicines and which are symptoms of her conditions.
Sue aims to be as informed about her medicines as possible. She has spoken to her pharmacist about side effects she has experienced.
Some people have discovered that a medicine can have an unexpected, but welcome, side effect.
Linda has been on a new medicine for Crohn’s disease for one week. She finds it also seems to relieve menopausal hot flushes.
Difficulties administering medicines
A number of people find taking medicines physically challenging (such as swallowing large tablets) or difficult and inconvenient to administer. This sometimes makes it impossible for people to take medicines on their own and they need to enlist a household member or a neighbour to help them.
Sue found she could not open the bottles of some of her medicines and had to ask her pharmacist or neighbour to help her.
Linda finds the enemas difficult and messy to use, as well as expensive and not very effective, so she does not use them every day as she knows she is supposed to.
Diana finds it difficult swallowing so many tablets. To help with this, she now buys supplements in different forms that do not need to be swallowed.
Ineffective medicines
Sometimes a medicine is ineffective or does not work as well as it should do. Some people need to experience clear evidence that a medicine is effective, such as a reduction in symptoms or positive test results. It is extremely frustrating and difficult for them to be motivated to continue taking a medicine if it is not working as well as they had hoped.
Emma and her doctors hoped that midodrine, a medicine for low blood pressure, would also slow her heart rate. When that did not work, she was prescribed an additional medicine that came with a number of risks.
What people also talk about
The Living with multiple medicines project was developed in collaboration with
