I’m finishing up the Remicade preloading infusions on May 22nd and will continue with every 8 weeks after that. It was clear that I needed to start a biologic treatment. My inflammation had not decreased much at all after 3 months on Methotrexate and Sulfasalazine. My liver enzymes were a bit elevated too so we didn’t really want to increase either.
Dr. N gave me the option of Humira or Remicade to start. I did some research and decided I wanted to give Remicade a try. I had read that the results were quick and I liked the idea of a treatment that I went for every 8 weeks rather than a shot every other week. I was also a bit concerned about the cost factor too. Humira is much more expensive and while I have great insurance, I knew I would have to pay a co-pay portion.
I didn’t avoid the scary self-administered shots though, I was switched to self-injection methotrexate once a week. The side effects of the pills were horrible. My moods were all over the place, with some extreme breakdowns that had my family very worried. I was also sick and completely out of it for the entire day every Saturday after taking the pills Friday night. The injections are much better, I’m a bit fatigued but still functioning on Saturdays and I don’t really get sick to my stomach at all from them. The packaging is a little scary though, not as innocuous looking as a normal pill bottle. There was also a bit of a learning curve with the administration. The first time I gave myself a nice ugly bruise.
At the same time that we started the process to start Remicade and switched to injectable methotrexate Dr. N also addFibromyalgiagia to my diagnosis. The muscle and nerve pain I’ve had in my back and neck has just continued and at some times gotten unbearable. I tried to get a massage and it was excruciating. She put me on a low dose of Cymbalta which I believe has helped with my mood swings and is helping a bit with the muscle and nerve pain. I’m also starting aqua therapy with a physical therapist next week.
Notice I haven’t mentioned yoga. That’s because I haven’t done yoga in forever and ever. I think about it from time to time but I’ve been so consumed with pain and treatment I’ve neglected my plan to invest my time and efforts into yoga and meditation. I’m recommitting though. That’s what brought me back to the blog. The idea of documenting this journey as a form of accountability, holding me to the things I know I need for self care. A better diet, exercise, meditation and creating a life and a body that is flexible.