Ada has responded very well to the Tacro. She has been in remission all year so far, the longest in a long time. In June she started spilling again, but only at a 2. The difficult thing was she was suppose to be going on an LDS Trek - hot, dry weather with miles of walking. The PA was worried about her going while she was spilling, but after discussing it with the Dr, considering there would be ample medical staff on hand, we - her parents - were also going to be on hand as part of the staff, and she would only be an hour and a half drive from the children's hospital, she received medical clearance to go.
While she continued to spill on trek, she did not worsen and did not become swollen - what a blessing. After she got home, we went to see her Dr. We talked, the Dr. verbalized all his thoughts, then said he was inclined to just let it ride for another couple of weeks. If she didn't improve, then we would have to increase her dosage.
I agreed to this as it felt right. Sure enough, about 5 days later her protein went back down to negative and she was doing great again. So glad she is doing so well.
As to the medicine, we did a lot of calling, checking with various pharmacies and our insurance. We checked all the medication coupon plans. Eventually we found that by appealing for a change in pharmacy we were able to get the cost of the medicine down to $100. Although that still seems like a lot, it is pennies compared to the $600 we were originally quoted.
