Just before I turned 5 my ankle started to hurt. I was always limping by the end of the day. My mom took me to the walk in clinic and they told her I sprained my ankle and to elevate it. 2 weeks later I started limping on my other ankle so back to the walk in clinic. This time the walk in clinic send us for a bunch of tests. My mom knew something was wrong and booked an appointment with the pediatrician. We were then sent to the Children's Hospital Rheumatology department.
Our first appointment with Rheumatology was very overwhelming for my mom. We were there for over 3 hours and they kept shaking their head and telling my mom how much pain I was in. She met with doctors, nurses and a pharmacist. They need to put me on prednisone and methotrexate. We had to wait a month to start as I was getting my MMR vaccine the next week. It was a very long month and my neck hurt and I could not really walk. We went out and bought a wagon so I could still go to the zoo, etc.
After starting methotrexate and prednisone I felt better on some days and some days I could not walk. This was hard as I was starting kindergarten. My face got puffy from the prednisone. Three months later the doctors said the methotrexate was not working and we would need to start a new drug Embrel. This required my dad to give me a needle once a week. I cried and so did my mom everytime I got my needle. Fast forward 3 months and the doctors again said the drug was not working and we needed to switch to Humeria. This needle hurt more than the Embrel one. We had so many hospital appointments and everytime we went the doctors would shake their heads and say how much pain I was in. We would leave and my mom would cry as we drove home.
During this time I had to go for many surgeries to have my joints injected. They put me asleep for all of these as it is too painful. I really like going for the surgeries as afterwards my mom takes me out for dinner!
Summer of 2015 right after I turned 6 we started a new drug Actemra. This required us to go to The Children’s Hospital Day Medicine and be hooked up to an IV for the afternoon. I got a metho prednisone IV and then an Actemra IV. I had to go every 4 weeks. It seemed to be helping and I only had to go for two more day surgery joint injections. I could finally run like a regular six year old and was the fastest runner in my class.
I am now almost 10 years old and been going to the hospital every 4 weeks for the past 4 years to get an IV infusion of Actemra. I have not been in pain for a long time and forget what Arthritis feels like. This would not be possible of it was not for the research that the arthritis society funds.
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