I hope everyone is managing okay. This disease is tough.
My last blog post was in 2015. At that time, I went and saw my rheumy. He ran lab work and my CRP was elevated but my SED rate and all other labs were normal. He referred me to my primary doctor for a possible UTI because there were nitrates in my urine. He recommended water aerobics, and prescribed Gabipentin for my pain. At that time I was in a really bad place mentally. I was trying to find a psychiatrist to help with depression but was not having much luck. I had lost my dad the year before. I was in severe pain (but was not experiencing any signs of infection) and I desperately wanted to know what was making me hurt. I had no solid diagnosis and was convinced I needed to know the name of the monster.
Fast forward to now. I’m in a much better space mentally - finally in a stable job, grieving has passed, stable relationship. I’ve accepted the fact that my rheumy doesn’t treat the name of a disease - he treats the symptoms regardless (which is a blessing.) The problem is the major flares have become worse. I push myself so hard to get through the week - up every day, into the shower, out the door to work for 5 days in a row a week 8AM-5PM. Frequently on Friday I come home and go straight to bed and don’t wake up until some time Saturday. The rest of my energy get used recovering from the week or doing household chores in preparation for the upcoming week. My energy is zapped fighting my own body and dealing with pain. I finally decided I can’t continue like this. I’ve isolated myself from everyone and can no longer do things I enjoy which is not much of a life. So I made an appointment with my rheumy to check in and get back on treatment.
He drew lab work of course. And for the first time in the entirety of my disease my SED rate was elevated along with my CRP and WBC. WBC was not elevated enough to suggest infection, only inflammation. That with the pitting in my nails was enough to convince my rheumy of a solid diagnosis.
It’s been 6 years since I was on a TNF Blocker. But I was approved for Simponi and will begin that on Tuesday when it arrives. I am so thankful that drugs like this exist to help us. I can’t wait to read through your experiences on here with Simponi.