I saw the hematologist on November 17th and, unfortunately, my platelets dropped from 114 to 100 so he decided not to taper the prednisone down to 5mg. He said he would get a manual platelet count and if that was higher he would approve the taper. His office was supposed to call either way, regardless of whether the results were different than the CBC but they never called. I’m assuming that meant the results weren’t significantly different enough to warrant a taper. Luckily, my protein clotting factors all came back normal and I haven’t had a bloody nose since the beginning of the month. My hemoglobin has been a fairly steady 12.0 all month (ever since July, really).
The last few weeks I have been having more GI issues than hematological ones. I finished the two week antibiotic for the infection in my small intestine and, unfortunately, nothing improved. I started having painful stomach aches and abdominal pain that mimicked the feeling of hunger. The pain would temporarily subside as I was eating but would then steadily return. It felt like a painful and achy hollow feeling in the pit of my stomach. This combined with the fact that I had another GI bleed (single incident this time, not a 24 or 36-hour bleed) made me nervous. When I saw my GI on Monday, November 21st she had a few ideas:
- Up my Protonix to 40mg daily, instead of 20, which is fine on a short term basis. Protonix is meant to be preventative. I think she wishes I had been on a higher Protonix dose when I first began the 100mg of Prednisone. Hopefully the Prednisone hasn’t caused any irreversible damage
- Test for a wider range of infections and parasites
- Take a few vials of blood to look at my thyroid levels and celiac levels
- Send me to NYU Hospital for a CT scan to check for inflammation in my intestines (it would involve fasting for four hours, drinking some gritty liquid, and getting an IV of contrast)
The day before Thanksgiving she called and emailed me to let me know my blood results were back. Two of my nonspecific inflammation markers, ESR (erythrocyte sedimentation rate) and CRP (C-Reactive Protein), were both elevated, meaning there is inflammation somewhere in my body/system. She asked me to please move forward with the CT Enterography. My followup with her is scheduled for Wednesday, December 21st. I’m hoping to have my CT soon so I’ll have results by then.