No appointment for Tim

Tim got to skip to two weeks for the first time since 2008! He's been in at least once a week to the hemonc for treatment or counts for 2.5 years now. We have decided to try to bring him off the NPlate because he's on such a low dose. We go in next Friday.

Hi, it's been a long time since I've seen you on here! It's so great to hear that Tim is still doing well! Is he currently on the minimum dose? You will have to let us know how his platelets do if you decide to take him off completely! I hope his platelets stay in the safe range for a long time to come (even forever)!

Caitlin is continuing to do great as well! She is on Plaquenil, but this does not seem to effect her platelet count one bit. She is still on the minimum dose and this morning her count was 137 so we couldn't be happier! I also feel like she could probably do without Nplate, but while she's on the trial, we don't have a say-so in what she does unless we want to remove her from the study and then we'd be stuck if the minimum dose is really helping her. From what I've heard at the clinic, it is still not that easy to get this drug as a pediatric patient if they are not on the trial. Caitlin is going to go to a very competitive gym beginning in May so she will need all the platelets she can get!

Pauline,
Its interesting cause I know there is at least one other child on Nplate in our practice and she's not in a study nor is Tim. I wonder if its regional or if some doctors just have more pull with the drug. Tim has been on 1mg/kilo for months now, his hemonc called it a "pitiful dose". Two weeks ago his platelets were 73k, which was unusually low. I think it was because he took a pain med similar to ibuprophen, but stronger. We'll see what it is this Friday after skipping last week.

I think its wise to keep her on for a while because of the competition. I bet the manufacturer is loving the numbers she's giving to the study,lol. I would hope they will include the fact that she had Rituxin. I'm sure there is a positive correlation. I'm gonna mention it to Tim's hemonc. I know he said before that though Rituxan might not give a remission, it often makes ITP easier to treat with other meds.