Doctors’ understanding of rheumatoid disease does not align with patients’ experiences
BMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f2901 (Published 14 May 2013) Cite this as: BMJ 2013;346:f2901
- Kelly Young, president
- 1Rheumatoid Patient Foundation, PO Box 235251, Cocoa, FL 32923, USA
- kelly{at}rheum4us.org
When I was diagnosed as having rheumatoid arthritis in 2006, I knew nothing of its symptoms or treatments. I had no concept of typical disease presentation or what the medical profession thought about it. I had not heard of DMARDs (disease modifying antirheumatic drugs), cytokine, or DIP (distal interphalangeal) joints.
Weekly injections of adalimumab and 25 mg of methotrexate effectively reduced fatigue and symptoms of vasculitis, but daily fevers and constant joint inflammation continued, leaving me unable to accomplish most of my usual tasks. After two and a half years, my sympathetic rheumatologist confessed to not knowing what else to prescribe. Then I read everything I could.
Passing time brought more functional loss. While I mourned my old life I was determined not to surrender to a perpetual downward slide. I would fight this disease in whatever way I could find.1 I devoured academic articles, news stories, and patients’ reports, recording what I learnt in a blog called RA Warrior (http://rawarrior.com).
Usual explanations of rheumatoid arthritis had led me …