I have been talking with the doctor facilitating the study for Nplate for a couple of months now about possibly decreasing or taking Caitlin off Nplate since she has been doing so well! Her count earlier this week was 159. Last week, he got the green light to start a new study and there are a few others that are going to do the same...see what happens in pediatric patients as they decrease their dosage towards getting off the drug. All patients involved are patients doing very well and having stable counts on the minimum dose. Caitlin was at 1 mcg/kg and now she is at .5 mcg/kg. She is going to do weekly blood draws starting next week to monitor her counts closely. I was a little worried because we started to see an increase in bruising, but they've already started to fade and no new bruises have come up. If she does well for the next 3 weeks, they will move her down to .25 mcg/kg every other week and then she will stop. I am really excited about this and praying that Nplate is not what is causing her counts to be so stable. We will find out soon enough!
Still hoping that this drug becomes approved for children because this drug has allowed Caitlin to get through most of the last 4 years without restrictions. Next year, she will be going into high school so I hope we will see the end to ITP soon!
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)
Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg
Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...
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