Lenny and Mielle went to Chicago again last week, and while we are still waiting for the results of the bloodwork, things went really well. Her doctor was pleased so we will resume the slow, slow tapering of her meds once we see that there are no surprises on the labs.
Mielle looks great and acts great these days. She has strength and energy to keep up with her friends, and her appearance has gone back to almost-normal (she is still round in the face and has a little poochy tummy, which I attribute to the steroid that she's still on. It's a MUCH smaller dose, but still, it's something). Actually, our next decision is which drug to concentrate on tapering next: the prednisone, or the methotrexate.
Pros to tapering the prednisone: reduce the steroid side effects, such as the puffy face and belly, mood swings (they are SO much better but we still see the effects now and then), resume growth. (Steroids stunt the growth; Mielle did not grow one bit taller for nearly 1.5 years. In the last few months, the dose has been low enough that she has edged up a little. It's wonderful to see her growing again, and if we reduce the prednisone even more, we presume this would speed up.)
Pros to tapering the methotrexate: we would soon be able to switch from a weekly injection (not fun, even after doing it for so long) to oral. She currently takes a number of additional meds, whose sole purpose is to thwart the side effects (debilitating headache and nausea) so as the mtx dose lowers, we would be able to reduce those as well, and have her on less medications overall.
Obviously, the goal is to eventually taper/eliminate BOTH prednisone and mtx, but we need to determine which takes priority right now. Dr. Pachman asked Mielle what bothers her most about having this disease and not being "normal", and she said she doesn't like being so short. So although we haven't totally decided, I think we're leaning toward trying to completely eliminate the prednisone.
Again, this is all dependent on her labwork looking good, so... fingers crossed.
And may I add that I am beyond ecstatic that these are the types of questions we need to answer now... "Which med to taper next, since things are going so well?" as opposed to "Which horrible drug should we TRY next, because things aren't going so well?" Believe me, it feels wonderful to be on this side of the fence, and I just hope, hope with every fiber of my being, that we stay here. Forever.