Hi! For this week's blog, I will be talking about and breaking down my personal experiences and journey with Rheumatoid Arthritis.
First... some medical vocabulary
Juvenile Idiopathic Arthritis/Juvenile Rheumatoid Arthritis | an autoimmune disease and type of arthritis that causes joint inflammation and stiffness in a child aged 16 or younger |
Aspirate | the act of withdrawing the fluid, tissue, or other substance through a needle |
Lyme Disease | a bacterial infection you get from the bite of an infected tick |
CAT Scan | an X-ray image made using a form of tomography (computerized axial tomography = CAT) |
Rheumatologist | A doctor that is specialized in diseases that affect the joints, muscles, bones and immune system. |
Synovial Fluid | a fluid in the joints that lubricates and allows them to move freely and have full range of motion |
Synovium | located in the joints and produces synovial fluid |
Oligoarthritis | RA in four or less joints, typically larger ones |
Polyarthritis | RA in five or more joints, often on both sides of the body |
Biologic | a medication developed from blood, proteins, viruses, or living organisms |
Immunocompromised | someone with a weak immune system, which affects its ability to fight off infections and diseases |
Click here to learn other vocabulary involved with RA!
I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) when I was in fourth grade. To put this into perspective, I was 9 years old. Only about 50,000 children in the United States have JRA.
The summer before going into fourth grade, my mom noticed my left knee was swollen in a picture of my sister and I. All I had done that summer was go to a soccer camp and I wasn’t injured, it sort of just showed up. It didn’t hurt, but it was definitely filled with fluid. My mom immediately made a doctor's appointment with my pediatrician to figure out what was going on. His first thought was Lyme disease, so he ran some tests which later showed it wasn’t. I then had to get a CAT scan and from there was referred to a Rheumatologist at CHKD, Dr. Christos Gabriel.
At this point, Dr. Gabriel diagnosed me with Juvenile Idiopathic Arthritis (JIA), also known as Juvenile Rheumatoid Arthritis (JRA). JRA is the same thing as Rheumatoid Arthritis (RA), but is found in children under the age of 16 and is possible to grow out of.
The next step was to aspirate my knee. As said before, my knee was filled with fluid. This fluid is called synovial fluid. All joints have a certain amount of synovial fluid, it lubricates the joints and allows them to move freely and have full range of motion. In a patient with Rheumatoid Arthritis’s case, the synovium, which produces the synovial fluid, swells and thickens, thus producing an excess amount of synovial fluid. This then causes more swelling, inflammation, and stiffness in the joint. Having too much synovial fluid has long-term consequences, such as joint and cartilage deterioration. It could also stretch out the synovium, which holds the joint together, therefore making the joint less stable.
The fluid was then drained from my knee and I was injected with cortisone to help reduce pain and inflammation. I was prescribed Naproxen, an anti-inflammatory drug that helps reduce arthritis symptoms. Over the next few years I tried other oral medications, but none seemed to help.
At first the only joint involved was my left knee. This means I had Oligoarthritis, RA in four or less joints (typically larger ones like the knees.) As the years went by, more joints became involved. I’ve had flares and aspirations in my left knee, both ankles, elbow, and even my jaw. This then turns it into Polyarthritis, RA in five or more joints, often on both sides of the body. By this time, it hadn’t grown out of JRA, so now I had RA and will have it for the rest of my life. At one point in my journey I tried Methotrexate, which was a bi-weekly injection. I had negative side effects from this drug and had to stop and revert back to oral medications and aspirations.
Throughout this whole journey, I was still extremely active and involved in sports. I played for a travel soccer team, as well as on the school soccer and field hockey teams. Sometimes overuse or minor injuries, such as rolling my ankle, would cause a flare. I would then have to have the fluid drained, take about a week or so off from playing, then get right back out there.
I ended up quitting soccer entirely my freshman year of high school and focusing completely on field hockey. By September of my junior year, I was offered a scholarship to play Division 1 at Longwood University. Sports throughout my youth was nothing compared to the level of physical demand of collegiate athletics.
My freshman year of college I knew I needed to take the next step for treatments to be able to physically keep up with playing a Division 1 sport. This is when I began taking Humira, a bi-weekly injection. Humira is a biologic medication which means it is a medication developed from blood, proteins, viruses, or living organisms. Taking Humira has put me into an almost full remission, but with the occasional flares of pain, stiffness, swelling. Since I’ve begun taking Humira, I haven’t needed any joints aspirated and have had little to no excess synovial fluid.
Below, there is a video with more information about Humira and how to use it.
Although I have figured out what medications work best for me, there are always other complications when it comes to having an autoimmune disease. Having RA means I am immunocompromised. This means my immune system is weakened and I am at a greater risk of getting sick. This was extremely difficult during 2020, the COVID-19 outbreak. I tried my best to stay safe and not get COVID, but I eventually did get it and was very sick and had some serious lingering side effects from it. I try to make sure I take vitamins and avoid getting sick because I am more likely to be affected worse.
At this point in my life, I have figured out ways to make living with RA just a little bit easier. In next week's blog, we will dive a little bit deeper into some of the tips and tricks I have found along the way! #RaEverday #RheumToGrow
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