During Autoimmune Disease Awareness month (March), my intent is to do exactly what the month is devoted to – create awareness of autoimmune disease. With that in mind, I’ll share a bit of my own story. My autoimmune diseases are rheumatoid arthritis, Sjogren’s syndrome, and Reynaud’s syndrome. Autoimmune disease is not a solitary creature. It travels in groups and appears at the most inconvenient times.
Rheumatoid arthritis (RA) is my primary diagnosis. Although many people go through years of doctor’s visits without a diagnosis, my own disease seemed to hit fast and hard, like a sudden attack.
I woke up one morning with raging pain in my hands and feet, unable to walk or hold a coffee cup. (That last part might seem unimportant, but it’s vital to me.) Hand and foot pain are classic textbook symptoms for RA. It doesn’t manifest itself for everyone this way – and that is why it sometimes takes too long to diagnosis. Perhaps I was fortunate that mine appeared this way because it was right out of the textbook. I didn’t feel fortunate that morning.
The intense pain, burning, and swelling in my joints left me no choice but to call my family doctor and ask for an appointment that day. When I think back, it’s strange that I never thought about RA as the source of all this trouble. My paternal grandmother had RA. She must have suffered greatly, but I don’t remember her complaining about pain as I watched her take care of the house and her gardens with her joints twisting her body in all the wrong directions. Perhaps, like me, she felt that people would not/could not understand what she was experiencing.
My family doctor ordered blood tests and I was diagnosed within a few days. But not with RA. My initial diagnosis was Sjogren’s syndrome (SS) because the tests were positive for it. That was enough evidence to send me to a rheumatologist for further diagnosis and treatment. When the rheumatologist saw my hands and feet, and heard my family history, she was confident enough to diagnose the RA. It seems I’m seronegative for RA, which means that traditional blood work doesn’t show evidence of the disease. For almost three years I had no tests to prove my diagnosis. Just symptoms.
I began a course of treatment that began with methotrexate alone. When that didn’t relieve symptoms, a dose of Humira two times per month was added. That seemed to help for a while, but then my symptoms worsened. I encountered problems communicating my pain to my rheumatologist at this point because my joints did not appear to be red and swollen. But the pain was becoming more and more intense. I tried for months to convey my concerns, my pain, my inability to get through my work day to my doctor. I had no lab tests to back me up. And yet I knew my disease was extremely active by my pain and my total exhaustion.
Finally, my doctor realized that something was going on with my disease that could not be seen. A few months ago, she ordered a biological marker test (Vectra DA). The results? My RA was highly active. Since my Humira dose had already been increased to weekly and that had no effect, we discussed a new plan of attack. I am presently waiting for the Humira to clear out of my system and will begin Orencia infusions in two more weeks. I have a new line of attack available to me.
In the meantime, with no help but the methotrexate, I will push through those few weeks till my Orencia. And I will again hope to find relief.