Update

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.

Sticker Shock

We have been very blessed that prednisone has been an affordable drug.  In the past insurance has kept all other medications affordable to us, expensive being over $50.  This year we have a new insurance program, which is not nearly as nice as we use to have.  We were expecting the medication to cost more this year, probably in the $100 to $200 range.  Nothing could have prepared me for the $600 price tag.  I'm going to have to do some looking around and finding out what programs to reduce medication costs are out there.  Wish me luck.

Steroid Dependent

Waiting for the Dr

Well, Ada relapsed again, so the other day we went in to the clinic to consult with her doctor.  Because she responds to the prednisone, but relapses before she is off she is classified as "steroid dependent", which is better than steroid resistant - where the person no longer responds to prednisone.

Bring something to do

The Dr discussed a couple of options.  Cyclosporine, which has the undesirable side effect of excess body hair and is potentially toxic to the kidneys.  Another medicine which I forget the name of that may or may not be successful in treatments as all tests with it have been in teens who are prone to remission anyway.  The final drug, and the one the Dr recommended was Tacrolimus, which is similar to Cyclosporine but without the hairiness.

The expectation is that with the additional help of Tacrolimus Ada will be able to wean off of Prednisone, which will allow her to grow.  After she has been off the prednisone for a year, then she will be weaned off the Tacrolimus, with the hope that her NS will stay in remission.

We will get her started on the Tacrolimus, and then in one month a blood screen will be done to make sure she is at the right dosage and not having other adverse side effects.