Usually in the winter, the symptoms stemming from my Sjogrens, POTS and other conditions tend to flare up. I was prepared for a flare but I didn’t expect the nightmare that subsequently happened. I went on a brief trip to LA to escape the cold, but when I returned my quality of life seemed to go downhill. It was more than a flare. Enough that I could no longer suck it up and continue to push through with life. Enough that I could no longer keep my pain and discomfort hidden. I pushed through the holidays, however had to take off from work for much of the remainder of December.
The flare could also be blamed on the fact that my Rituxan infusions were wearing off and I was due for my next round. Since I tend to have unusual reactions to the infusions, my doctors and I strategically made a plan to lessen the effects. I would do the infusions weekly for four weeks instead of two and I would increase the number of preventive premeds given. I was desperate for this round of infusions.
When infusion day came, I was ready. After Benadryl, steroids, an inhaler, liters of saline, Pepcid, tylenol, and zofran, the Rituxan was ready to be infused. The emergency meds were already ordered and placed on the table next to me, anticipating a reaction. Hours later, I thought I was in the clear with no reaction in sight. That was, until a wave of nausea hit. As I went to the restroom, I began vomiting. Within seconds, my throat was itching, I was sweating, had a high heart rate, fever and was extremely nauseous. After informing the nurse, the reaction protocol began and emergency meds were given. A half hour or so later, I was feeling better and the infusion continued. I went home after spending about 8 hours in the infusion center.
When I went home, things didn’t get better. Sparing the details, my symptoms were severe and I was virtually bed bound. Bad enough that I wanted to no longer continue with treatment. Stopping treatment could mean progression of my autoimmune disease but the symptoms I’ve been feeling don’t seem to make treatment worth it. To me, the benefits no longer are outweighing the negatives. If I stop this treatment, there would be limited options left for treatment but that was a risk I was willing to take. Although my actual health conditions aren’t life threatening, my quality of life is being limited and I never know what complications could arise. I wasn’t giving up but I know I have had enough.
After voicing my concerns with my very kind and empathetic doctor (who is amazing for putting up with me), I decided to at least finish with this cycle of Rituxan. In order for me to do this, I reluctantly will have to take a short medical leave from work in order to really focus on recovery. These decisions have been some of the toughest decisions I have ever made. I never thought that at 26, that my life would be this complex. I truly appreciate all those who have been supporting me through this because I have no idea what I would do without these people.
Just have to keep pushing.