“It’s important for young people to speak out about side effects of methotrexate”

07 December 2020
Aimee at home and with her puppy.
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Methotrexate is often one of the first drugs given to children and young people with arthritis. It has been used to treat juvenile idiopathic arthritis (JIA) for many years.

It reduces pain and swelling in joints and can stop arthritis damaging them.

Many people take methotrexate without any problems. But, like any drug, it can cause side effects. One of the most common, especially in children and young people, is feeling sick.

Tell your doctors and nurses if you start to feel sick or have any other side effects after starting methotrexate. It’s easier to sort these problems out early on, so the sooner you tell people, the better.

Aimee’s methotrexate journey

Aimee, now 16, was diagnosed with JIA aged 12. As a talented Irish dancer, Aimee has always been active. A year before her diagnosis her ankle started hurting. Her Mum noticed she was lifting things differently and didn’t have as much movement in her wrists.

“The day I was diagnosed I was prescribed steroids and methotrexate tablets.”

At the beginning, I didn’t experience side effects, but after about six weeks, I started feeling sick after I took the tablets. I couldn’t sleep because of how sick I felt and eventually I began being sick. During this period, I had lots of physio and occupational therapy to help me regain movement in my ankles and wrists, and I soon had better mobility.

Towards the end of that year I was fighting with my Mum over taking it because of how horrible it made me feel.

“I took methotrexate on a Friday night which was usually when I went out with friends, so I dreaded going out because I knew what followed.”

Despite taking methotrexate at the weekend, it affected my school life, I was constantly exhausted and come Monday I’d still feel ill.

After about a year my Mum and I decided to speak to my team about how I was feeling. They were so helpful, they agreed to reduce my dosage and advised me to take anti-sickness tablets the night I took methotrexate and the morning after. This helped for a while but eventually I began to be sick again.

Shortly after, I attended an event with Versus Arthritis where my Mum mentioned the side effects to Catherine (the group leader) who said the injection had less side effects. Mum and I decided to ask the consultant and nurses about this.

“I was moved to injections and my dose was reduced.”

From this stage my side effects really improved. I am now on 7.5mg of injectable methotrexate along with Amgevita (adalimumab), which is really helping to control my JIA.

I’m not exhausted from being sick and I’m not putting off taking methotrexate anymore. I now take my injection on a Wednesday as getting up and going to school distracts me from any possible side effects.

I have been injecting methotrexate for two years and it definitely helped with the sickness. The injection isn’t painful, it’s just like a pin prick.

It’s important for young people to speak out about any side effects they’re experiencing. They are the only ones who know how methotrexate makes them feel and it’s their lives being affected.

What else should I know about methotrexate?

  • Injections are the best way of getting methotrexate into your body to control your arthritis, and reduce the chances of you feeling sick. They are quick and easy to do – a nurse can teach you or your parents how to do them.
  • Doctors can prescribe anti-sickness medication, such as ondansetron. You might also be told to take folic acid. This is like a vitamin and can reduce side effects.
  • You shouldn’t stop taking methotrexate without talking to your doctors or nurses. This could make your arthritis worse.
  • If you’ve already stopped taking methotrexate, talk to your healthcare team as soon as possible. You won’t be in any trouble, but they will need to know so they can help you.
  • Tell your doctors and nurses if you have any other side effects from taking methotrexate or if you feel generally poorly, especially if you get a high temperature – over 38C.
  • Methotrexate can take several weeks or even months to start working, so your team might want to see if it works for you before trying you on other drugs including biological therapies. The key is to be open and honest about what is and isn’t working for you with any of your treatment.

Our services

If you or a family member under the age of 25 has arthritis, our Young People and Families services is here to support.

Our service offers advice on how to live well with arthritis, medication and potential treatments, as well as creating a safe space to ask questions, receive information and develop support networks.

Our face-to-face services have changed during COVID-19, but you can find out more about what’s going on via your local Young People and Family service.

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