My RA Downfall - The Year It All Went Wrong

When I was diagnosed with rheumatoid arthritis (RA) in 2014, I never imagined the complex journey that lay ahead. Despite my condition, I managed to travel extensively and push my boundaries in numerous ways over the years.

It Was Supposed To Be "The Year"

2024 was meant to be a year of excitement and opportunity. I had recently filmed content across Asia and was in the process of releasing videos, with plans to continue my creative work. Then, without warning, my health took a dramatic turn. What began as a few small red spots on my feet rapidly progressed to severe swelling in both feet. Within weeks, I became completely bed-bound. My husband had to help me move between the bed and bathroom. I couldn't navigate stairs, cook, or clean - my body felt like it had essentially shut down.

I spent countless days in tears, desperately trying to understand what was happening. Unable to secure an appointment with my specialist, I visited my GP, who directed me to the emergency room. There, I was dismissed with the explanation that it was "just my RA acting up" and that my specialist would handle it eventually.

The reality was far more serious. Fortunately, during my second emergency room visit, medical staff finally took my condition seriously. Three specialist doctors examined me, all puzzled by my symptoms. They discussed various diagnoses, but my test results didn't provide clear answers.

A Diagnosis Finally

After extensive research, I decided to invest in seeing a private specialist who focused specifically on RA and RA vasculitis (as that was a term that was thrown around quite a bit). Almost immediately upon examination, he recognized the nature of my symptoms and prescribed high-dose Prednisolone, and blood thinners to manage them. Whilst it wasn't quite Rheumatoid Vasculitis, it was bordering on similar symptoms. Within a month, the swelling subsided enough for me to move around more comfortably.

I continued seeing this private specialist for three more visits as he monitored my progress - without his intervention, I can't imagine where I'd be today. He recommended Rituximab treatment and referred me to University College London's RA department, where I was treated as an emergency case and placed on the treatment list.

Treatment Begins

I finally received the Rituximab treatment in December 2024, which has helped control my RA symptoms. However, I sense something fundamental has changed within my body. A mere 30-minute walk leaves my ankles in excruciating pain. I've received ultra sound guided steroid joint injections in my ankles despite no visible inflammation. I'm also experiencing a burning pain in my wrist that radiates through my palm and strangely extends to my elbow.

I recently underwent MRIs on both ankles and am now awaiting results. This has been the most challenging journey of my life, and I remain mystified about what triggered these intense symptoms.

The toll has been both mental and physical. I've gained 20kg from the steroids, despite careful eating habits. Exercise is virtually impossible because of the persistent pain throughout my body.