This is the quickest of quick updates. We got back from Chicago on Wednesday we hit the ground running, with appointments on Thurs and Fri and a big wedding for me today (Saturday). BUT, and I know everyone is anxious to hear how things went, so...
Briefly: Overall, I think it went well. Based on a test they do in the office, they felt that Mielle's disease activity moderate, not severe. They feel this indicates that her current treatment regime is helping. However, they also feel (as does her Stanford doctor) that reducing her prednisone dose is a high priority. She has been on the high-dose oral steroid for too, too long. So we added another new drug, another immunosuppressant called Cellcept, more commonly used for transplant patients to prevent rejection of the new organ. The hope is that this drug, along with the methotrexate she already receives, will give the necessary boost and make it possible to reduce the prednisone without causing another relapse.
Mielle left a lot of blood behind in Chicago, and we will get the full results on all that stuff in about a week. So the conversation we had with Dr. P in Chicago was preliminary. Once she has all the data from the visit available, we'll be discussing things in further detail.
We're not sure how often we will be going to Chicago, but at this point they want to see Mielle again in two months.
I will post a more complete story of our trip as soon as I'm able!