Some of the people we talked to discussed choosing treatments such as medication and surgery. Others felt that they had no treatment choice. This section describes the reasons why people chose to have treatment or not. It also describes why some felt that they had no choice at all. Here people talk about how they made decisions about their treatment and if they discussed things with their doctors or parents.
When making decisions about medication, people often based their decisions on information given by a doctor, who would talk about the probable benefits and side effects of a medication. Side effects are symptoms people sometimes get as a result of taking a particular medication, such as dizziness, headaches or sensitive skin. Different medications have different side effects, some small and some quite serious. Side effects affect everyone differently. Information about possible side effects can help a person decide whether a particular treatment is worth trying. They could either try the medication or ask for another option.
Jenna was offered the chance to be part of a clinical trial for tocilizumab. She was given lots…
People sometimes felt that they were not given enough information about treatments to make a decision. Sometimes they went away and did their own research online. Some felt there was too much information on the internet but were also pleased to discover alternative medications that doctors did not mention. Others were unhappy because they were not told about certain side effects before they chose to start a medication. Melissa said that her doctors didn’t want to give her information packs about medication. In the past she had turned down treatment options when she learned about the side effects.
Marie felt like she did not have enough information to make a decision about her son’s treatment…
Sometimes the only choice people had was whether or not to take a medication. A doctor would suggest only one medication and there was no other option. Methotrexate is the first medication that all people with JIA will be offered. Some were happy to take what the doctor recommended. Others felt happier when doctors reassured them that the medication was safe to take.
Cat was happy to take whatever her doctor recommended because she trusts her doctor. She has…
People sometimes chose how they took their medication. For example, some chose to have injections rather than tablets. People could choose to inject themselves or have a parent or healthcare professional do it. Some people had injections at home. Others had injections at a GP’s surgery or hospital. People sometimes took methotrexate tablets but later changed to injections because of bad side effects. Some never experienced side effects so stuck with the methotrexate tablets. Charlotte Y chose to take one anti-TNF medication over another because one came in a syringe while the other came in pen form. People could sometimes choose when to take their medication.
Michelle always felt sick for several hours after taking methotrexate. She chose to take…
Younger people sometimes relied on their parents to make decisions about medications. Parents said they weighed up the benefits and side effects before they let their children take the medication.
Sometimes parents felt that the medications were too risky to take. Stacy said that she had “no hesitation” when her son was prescribed methotrexate. She said that the side effects were a “small price to pay” given the benefits of the medication.
Mary felt the side effects of methotrexate were doing her daughter “more harm than good”. It is important to discuss potential side effects with your doctor. After two months Mary made an appointment with the doctor to discuss alternative treatment options.
Tina was worried about the side effects of methotrexate so got a second opinion from a doctor in a different hospital.
Some parents made treatment decisions with their children. Jenna and her mum, Karen, made a decision together about Jenna going on a clinical trial. The doctor explained things and provided information both from a young person’s and a parent’s perspective.
Charlotte X did not want two Enbrel (etanercept) injections a week and was angry with her mum and…
People were often able to make more choices as they got older. This was sometimes because people felt old enough to make decisions for themselves rather than relying on parents. For example, when Melissa turned 18 she felt old enough to tell the doctor that she wanted to try new medication.
Some people talked about finding out about treatments on the internet which they wanted to try. People also reported feeling more confident with age and started asking more questions about treatment. They sometimes asked to be seen by different doctors or at different hospitals. Some children’s or adolescent’s clinics encourage people to learn about their disease and medication so they can start to make decisions about their treatment.
Ruth said that she used to take whatever medication the doctor gave her without questioning it…
Emma knew which medications she wanted to take and which to avoid. She was insistent with her…
Some of the people we spoke to said they made choices about other types of treatment, such as surgery. For example, Michelle was offered ankle fusion surgery but decided not to have it. She said she did not want to walk with a limp and have to have her ankle redone every ten years.
Elizabeth was offered Botox injections in her eye. She said she had to “put my foot down” and demanded to be asleep for the procedure.
When Kyrun was in hospital his physiotherapist helped him set goals he wanted to achieve during therapy. Kyrun wanted to get his legs off the bed, get completely out of bed and be able to push his wheelchair by himself. The nurses and physiotherapists helped him achieve his goals.
Some of the people we spoke to refused medication or stopped taking medication. Sometimes this was because people did not like having injections. For example, Ryan stopped coming home from school on the day of his injections. His mum said, “He’d rather just have arthritis than another needle.” Dean had panic attacks and passed out when he tried to inject himself with methotrexate. He was afraid of getting it on his pregnant mum and harming her.
Charlotte Y stopped taking all of her medications because she wanted to get pregnant. When people stopped taking medication their arthritis sometimes got worse. Michelle always took her main medication but did not take lansoprazole (proton-pump inhibitor) which was supposed to protect her from the side effects of medication. She felt the medication had no immediate effect so she asked “why bother” taking it?
You should never stop taking your medication or change your dosage without speaking to your doctor. If people are struggling to take medication such as injections there is a lot of support available if you speak to your rheumatology team.
Sometimes people refused to take any medications because they did not want to accept that they had arthritis.