Steroid Addiction

Unfortunately my wean off steroids failed. Sunday, July 16 was my first steroid-free day and I was so excited. I did well for a few days, but the following weekend we were away for a baseball tournament and I was struggling with walking to the field on flat ground. Hmmm, seems odd. Then I developed a low-grade fever which I attributed to pain I was having in my jaw which can be a side effect of the chemo I’m on. When I got home, I struggled even more as I needed to climbed stairs to go to bed so I called my doctor. They didn’t seem too concerned and had me come in for my regular pre-chemo appointment the next day where I was put back on steroids :( Unfortunately chemo was also delayed as they didn’t want to tank me any further than I already was, but I didn’t end up in the hospital.

On Thursday I went to the pulmonologist who scolded me for stopping steroids early. I didn’t realize I had. He had given me a step down schedule, which I followed. But, I guess he expected me to stay on the lowest dose until I saw him again. Oops. But, I’m glad I didn’t because this episode was resolved before my trip to Bethany Beach. If I stopped my steroids after seeing him, I could have had a problem at the beach.

Now my doctors are talking to see if there is a non-immunotherapy line of treatment they can try. The pulmonologist is convinced the inflammation in my lungs is still treatment related. If they can’t identify another treatment, I’ll stay on a low dose of steroids long-term. 

The good news is that there is an antibiotic you take with steroids and that has resolved my fever and ear pain. And I’m feeling better on the steroids so I’m in Bethany Beach enjoying myself while crashing Sara’s vacation. Toes in the sand along with a little boardwalk shopping is just what I need.