After making the trip to see my rheumatologist this week for a 3 month return visit, I kept asking myself whether I asked all the right questions. Maybe it’s because my doctor is 2 hours away and it’s more difficult to make a last minute appointment. Or it could be that I tend to worry more than I should. Regardless of either, I choose to take autoimmune problems seriously. Especially when it comes to medicine. Over the past few months my knee swelling has slightly elevated while the pain has not. I went to my last appointment thinking overall my inflammatory arthritis has improved. But has it? My legs feel stronger. I can literally see more muscle growth in my upper legs and my workouts have progressed. But the flare ups continue with significant effusions above both knees. At the same time I continue to taper my dosage of Prednisone 1mg each month.
While talking with my doctor, he mentioned the possibility that my inflammatory spondyloarthropy may still progress and if the current medicines do not work he will consider stronger methods like TNF blockers. I fear biologics like the plague. And I’ll admit, I’m pretty skeptical of any medicine when there may be potentially harmful, long term side effects.
Since I still have no hard evidence of exactly what my condition is yet, it’s difficult to feel like I’ve made much progress in finding a correct diagnosis. Furthermore, each time I visit my rheumatologist I wonder whether I should ask more questions about methods I’ve discovered to help like exercising and nutrition. Even though I like my current specialist, I feel that most treatment is more standard practice and not enough discovery. As the patient, should I ask for more options? In the past 2 years I feel like physical therapy and slow, steady water exercise has helped me regain strength more than any medicine. Then again, I’m lacking about 20 years of medical education and experience. Maybe it’s time to start med school.