The medical staff was extremely thorough...we had 2 conference calls with them prior to her appointment to go over medical records, answer questions, etc. Alyssa received a complete examination while we were there and current treatment plan was discussed. Dr. Carpenter was in complete agreement that what CCHMC is doing is not working. They made several recommendations on med changes (some added, some dropped) and want her seen more regularly at Cincinnati for the next month, to monitor progress while she starts this new treatment plan. She is still in the middle of a severe skin GVHD flare, but one of the biggest takeaways is that she is not considered chronic, she is classified as “late acute”. What he is seeing is more in line with what he would see 1-2 months post BMT. She is going back on prednisone, but at a significantly lower dose (20mg) than what she was ever started on before. Seattle’s approach is to start at a much lower dose, do a much slower wean, over a much longer time frame. So even though she wasn’t thrilled with being back on prednisone, at this dose, the side effects should be minimal. She’ll wean 1-2mg every 4-6 weeks and then stay on a low, maintenance dose for a year or more. We left very happy with the new plan and her current BMT doctor is completely onboard with all their recommendations.
So, that’s where we are today. Of course with all this coronavirus stuff, that’s just adding a new level of anxiety. Please, please, even if you are not in an “at risk” category, take every precaution to protect those that are.