In the latest of our ‘Your Stories’ feature, Ashleigh Clarke shares her Juvenile Arthritis diagnosis journey and talks about the challenges many don’t see, including when treatments don’t work and overcoming needle phobia.
I was first diagnosed when I was 8 years old. I had noticed that my left knee was swollen. It didn’t improve after keeping an eye on it for a while, so my mum took me to the GP, who sent me for blood tests and an x-ray of my knee. When these results came back, she diagnosed me as having arthritis.
I was referred to my local hospital who didn’t have a paediatric rheumatologist, and I was only the second child the clinic had ever had. I had to sit in adult clinics normally surrounded by retired people who got confused as to why a child was there. My first consultant was lovely but had no idea how to deal with children with arthritis. So, I ended up under dual care with Great Ormand Street Hospital. Every three months, me and mum would get on the train and head to London for a full day of appointments at GOSH. I would see the ophthalmologist, rheumatologist and physio whilst I was there. I remember them telling me that there was a chance I could get better and go into remission, but unfortunately, that didn’t happen for me. My arthritis started to progress quite quickly and spread to more and more joints. I quite enjoyed my trips to London. We would normally try and do a bit of sightseeing at the same time, so it wasn’t just all hospital-based.
Once I got to about 12 I needed to start on some stronger medication which meant monthly blood tests. Unfortunately, I had been pinned down on several occasions to have bloods, so I refused to have blood tests done; this greatly reduced the medication options I could have. GOSH wanted to start me on Methotrexate, so I had to get over my blood test/needle phobia. I was referred to the most amazing play specialist and child psychologist who helped me get over this needle phobia. I was on methotrexate for years, with the dose slowly increasing more and more. As the dose increased, this also meant the side effects increased. These got to the point that I couldn’t cope anymore, so my medication was changed. I then went onto injections at home! My mum had to be trained to give me sub-cut injections at home. She hated doing them, and I hated having them. But they did help.
By the time I had reached 16, the injections had stopped working, so now I was going onto infusions. Every 8 weeks, I would head to the hospital and spend a few hours sitting in a comfy chair having an infusion. I much preferred these to the injections at home! Luckily the infusions helped. I ended up trying all of the infusions on offer over the course of 10years. But again, these stopped working, and I was running out of options.
Luckily some arthritis medications you can go back onto after a break, some you can’t. So, I was restarted on the home injections. I wasn’t happy, but I didn’t really have much choice. It had been a long time since I had been on home injections, and they now came as auto-injector pens. I hated them! They injected at such a high pressure I found the injections painful. I had to get someone else to do them for me, and I just couldn’t bring myself to inflict that pain on me. But unfortunately, they didn’t work for me the second time around. Luckily a new range of medications was now available; these were JAK inhibitors. A whole new group of medications to try. Unfortunately, these didn’t work either. I am currently on Upadacitinib. This is the last medication I have not tried before.
In my 20+ years with JIA, I have been on every tablet, injection and infusion available to me, but nothing is controlling my JIA as much as I would like. I know no drug will ever make me feel ‘normal’, but not having to experience daily pain would be amazing. It’s a simple thing that other people take for granted.