Ellie’s Story

My name is Ellie Potter and I am 14 years old. I was diagnosed with JIA in November 2009. Before I got JIA I enjoyed a number of sports including Netball, Rounder’s and in particular gymnastics. I was always small, as I was also diagnosed with coeliac’s disease at the age of eight, which meant I had a great frame for gym.

In mid-September 2009, I started to experience pains in my knuckles and wrists. During September and October these gradually got worse, until the point where most days my eldest sister had to carry me to the bus stop every morning because I was finding it too painful to walk. My joints were always worse in the mornings. Throughout the day as I moved around, the pain would ease a little, meaning walking wasn’t so difficult. However, any sports were completely out of the question. One day in November (soon after celebrating my 13th birthday) I woke up during the night with excruciating pain in my hip. It was so bad that I had to crawl to simply get myself a glass of water. Early the next morning my mum took me to my local GP, who referred me to our local hospital. When I arrived I had to a have a number of X-rays and blood tests (something I had always hated, since my diagnosis with coeliac’s.) At this point I had a very high temperature of 40.2, one of the symptoms of JIA.

Late November I had my first (of many) appointments at Birmingham children’s hospital, it is hard for me to remember what happened in each individual appointment as they all seem to get muddled, but in this first appointment I had to have more tests, and I was told they thought I had JIA. Over the next few months the appointments gradually increased as my symptoms appeared more aggressive than ordinary JIA. Because of my extreme symptoms, I had further tests (such as an MRI scan) to rule out the possibilities of cancers or other tumours.

In January 2010 they started me on a three-day course of Intravenous treatment. This consisted of me travelling to Birmingham children’s hospital (an hour’s journey) for three consecutive days. Whilst there, I sat for three hours, whilst the drip pumped me with a high dosage of steroids, after these three days I felt better than I had in the last four months.

At this point, I was on very few drugs, only 30mg of steroids and an anti-inflammatory drug called Feldene. At this point, the quantity of steroids I was taking gave me a very bloated face, this provoked a few unkind comments from classmates, and despite my supporting group of friends and family, I was obviously still upset by my peers. Nevertheless, I knew this was a necessary step to my recovery. The doctors decided to leave my medication like this hoping the JIA had gone into remission. However by March my symptoms were back to how they’d been initially, so the hospital chose to for me to have a set of joint injections.

Joint injections are when the patient has a steroid injected directly into the joint causing aggravation. Ordinarily people have between five and ten of their joints injected, but in my case I had 44 individual joints treated. Because of this I had to be put under a general anaesthetic. As joint injections tend only to last three months I also had to be put on a more permanent treatment. This in my case was an injection once a week of Methotrexate, which is a low dosage of chemotherapy. This means the side effects are similar to those who undergo chemotherapy, for instance after each injection, I felt very sick for the following two days, and began to dread the weekly injection.

After three months, my symptoms were gradually getting worse again, so this drug appeared not to have helped me, so at an appointment at Birmingham, the doctors decided to give me a second set of joint injections, this time only 26 of my joints were injected. An improvement on last time. However again I needed another more permanent treatment, this time it was both Methotrexate along with another injection of twice weekly Enbrel/Entanacept. Over the next few months my JIA seemed to be under control, so at the beginning of September 2010, I was taken off Methotrexate and the Feldene drug. Yet a week after this appointment my joints began to severely ache, and it looked as though my JIA had returned. I was scheduled to have more joint injections just before Christmas 2010, this time it was only 14 joints that were injected, a great improvement on before! After this I remained solely on a twice weekly injection of Enbrel, and 20mg of Feldene, as well as the usual steroids.

In August 2010, Birmingham children’s hospital invited me on a charity activity weekend away for children with rheumatoid diseases. I had a great time, and it was really nice to meet other children who were suffering from similar conditions to me.

The 18-month experience of getting my JIA into remission, caused me to miss a lot of school due to hospital appointments, miss out on playing the sports I loved and caused a lot of anxiety to me and my family. But in March this year, Birmingham told me, my JIA had gone into remission, since then I have felt almost entirely back to normal, with only the odd ache or pain. I can now play all sports again and have really enjoyed doing so. My dosage of drugs has become far more manageable, and none give any noticeable side effects. But perhaps most importantly I have also decided that I would like to study Medicine at university, to be able to make a difference to others, in the same way all my doctors have helped me.

By Ellie Potter