My Medication Journey
Growing up, I never realized how different every person’s story was when it comes to Juvenile Arthritis (JA), mostly because I didn’t know other young people with arthritis. But now, I realize that each person’s experiences differ significantly. I noticed that one topic in particular varies extensively from person to person - medication.
That being said, today I will dive into an interesting story; my medication journey. This journey started a long time ago when I was diagnosed with JA at 18 months old. I’m told by my mom that I started on naproxen, although I have no memory of this whatsoever.
When I was four years old, I switched to methotrexate pills. I took six pills on a weekly basis for many years. The medication’s actual effects on my joints were overall positive - it worked pretty well. However, I struggled with a few side effects, the main one being nausea.
After a couple of years of taking the pills, they started to make me feel sick. My stomach would feel queasy and I’d need to lie down. This nausea then started being triggered by taking the methotrexate pills (or any pills for that matter). As soon as I’d swallow one, I’d get sick to my stomach. Clearly, I needed to adjust my approach because my meds weren’t actually being absorbed, as they didn’t even make it to my stomach for longer than 30 seconds. Thus, my mom started mashing the pills and putting them in applesauce. Unfortunately I could still taste its distinct taste. After a couple of weeks, I would throw up any time I tasted applesauce. We also tried yogurt, pudding, smoothies, and more. I could no longer eat any of these foods without getting sick. I dreaded medication day. Everyday I would think about it, whether that was at school, home, or even in bed.
When I was either eight or nine I was at my wits end with the methotrexate pills and switched to methotrexate injections. One needle per week. Not too bad. My parents and I were trained on how to administer needles at the hospital (although it was mostly
for my parents). We practiced on stuffed animals with the nurse to get the hang of it. The next week, it was time for the real deal. My mom injected the back of my arm and it was a
success! This became the start of a new routine. However, after a few months, I noticed that the nausea didn’t wear off. I was still experiencing this side effect. After getting my needles, I’d often have to lie down until the nausea went away. I remember the colour of the liquid in the needle being this distinct yellow shade. Eventually, I started associating nausea with this colour and would feel queasy any time I’d see it. Once I was at my friend’s house, and got nauseous from drinking from a plastic cup that was the same shade of yellow.
But the nausea from the injections was nothing compared to the pills, so I was grateful.
Regrettably, methotrexate stopped being effective for me. It was time for a change. For about six months, when I was 11 years old, I took weekly methotrexate injections and weekly enbrel injections to transition. After this point I was fully switched to enbrel injections (two needles per week).
Thankfully, this medication worked and I experienced almost no side effects!
I had a new routine; I would put numbing cream on my legs and let it sit for an hour, then my mom would administer one needle on each thigh once a week. This was great.
One day, when I was 12, I had an argument with my mom on needle day; I was angry. When she came to my room with the injections, I did not want her to touch me. So I took the needle and stabbed it in my leg without hesitation, as my adrenaline was pumping. Since that day, I’ve administered my own injections. It’s funny looking back because I don’t even remember what the argument was about, but I’m glad it happened because it led me to gain independence and control of my injections. Around that time I also started refilling my own prescriptions at the pharmacy and learned how to mix my medication (there’s a whole process, but the most important takeaway is to get rid of the air bubbles!).
I still take the Enbrel injections to this day. I’ve tried the pre-mixed auto injectors but didn’t like them; they hurt way more and would make my legs red and swollen. So, I’ve stuck with the two syringes that I mix myself. Years ago, I also stopped numbing the injections site, as I no longer felt it was necessary. Medication changes the way in which I manage my condition and enables me to be able-bodied. Although it has its challenges, the benefits far outweigh the costs for me (check out the last blog to hear about some thoughts I’ve struggled with in regards to medication dependence).
I am VERY fortunate to have found a medication that works for me, and to have the privilege of accessing it. I’m also grateful that this process has given me independence from a young age. I learned that I need to stay on top of my health and advocate for myself. As mentioned, every person with JA I've met has had different experiences with medication. If you’d like to share, submit a blog proposal! We’d love to hear.
Until next time,
DISCLAIMER: This is my personal opinion. I am not a doctor, nor do I claim to be. What I
experience is likely very different from what you or anyone else will experience. I simply want to promote discussion and by no means am I telling you how to feel, or how to treat your condition.