In the beginning of my freshman year in high school (2015) I had just gotten back from a weekend in Washington DC. With the strenuous walking I had done, when my joints hurt after I got home I thought they were normal for what I did. A month continued with my joints hurting. I went to my regular doctor and they ran tests on me. It came back with a Lyme diagnosis and I started treatment for that. Of course, my body never reacted to the medicine and I got retested for Lyme and arthritis. Lyme came back as negitive but my rheumatoid factors were elevated. My doctor put me on 80 mg of prednisone. But over the course of a few months my face broke out and swelled so much, along with gaining a lot of weight. So, in April we contacted a rheumatologist and started different medications. At first, they started working but soon they stopped working completely and we were back to the drawing board.
Fast forward to 2016, in June I had an allergic reaction to one of my medications. I was hospitalized for the first time for 3 days and nothing ever came out of it. That summer I was put on steroids before school for my junior year. I started going to school, but I could barely walk so I only went maybe 5 days total. My parents and I decided it was best for me to stop schooling because I couldn’t even walk let alone attend school.
October of 2016 I was hospitalized again because my numbers were too high or too low. We did a knee aspiration, knee surgery, and a bone marrow biopsy and still did not find out what was wrong with me- we had finally moved on from thinking it was just arthritis.
We still did nothing, and my doctor was pushing for me to go on steroids but I knew that nothing would come of my sickness if we were just masking the pain, so I didn’t take any.
In November of 2016, 3 days after my 16th birthday I was hospitalized again for pericarditis but this time my doctor’s partner in the hospital decided I had Lupus (SLE). Along with hair loss, weight loss, throwing up, heart problems, and joint problems, he then gave us a list of medications to try. I was relieved but frightened, at least I had a diagnosis but what does that entail?
I decided to try Benlysta which works AMAZING! I’m so relieved I chose this medication. I can walk, attend school, and feel like a “normal” person again. I obviously have better days than others but I feel good!