Timothy-forgot to update

He was at 223k yesterday. They decreased the Nplate to 3mcs per kilo. He is experiencing some achy joints, but otherwise no other side effects at this time. He is enjoying the high counts though. He's at a friends house for a few days for the weekend.

I hope everyone feels better soon. Tim is proof that it can get better, right? I hope Caitlin's migraine goes away soon and her counts stabalise, Dougie gets a remission for his ITP and the joint pain,that Roger gets answers (especially good ones), and that Danika finds a good treatment soon...well, really a good strong remission would be nice! Everyone else...get well and keep up your chin. It has to get better! It really does

Way hey! Thats really getting consistent now isn't it? It must be lovely for both of you to have some time without ITP worry and, as you say, amazing when you consider where he was count wise at christmas!

Here's hoping it continues Ali

That's great that he is still getting good counts and even better news that they decreased it! It sounds like his dr is very aware that the target goal is really just to keep them above 50. I wish our study coordinator would "forget the protocol" and decrease Caitlin's dose to .03 or .04mcg and see how she does. I have told the dr that I am really starting to have 2nd thoughts about Nplate altogether and that maybe we need to take her off because she doesn't feel right this time around. She will meet with us on Tuesday to discuss our options and I hope she will allow her to drop her dose down quite a bit. Or even stop giving the drug until her count goes below 20 again. (Last time they gave it when it went down to 65 and I would have been comfortable waiting another week or two.)

Caitlin is doing much better. She still had a heache yesterday, but it was no longer a migraine so we just gave her Tylenol. This morning, she does not have a headache at all. She has a friend over so that really forced her to get up and start moving around. I know you can "keep" your headache if you lay down all day.

Wow, so happy to hear you all have good counts. As of now they will not try Nplate or Rituxan on Emmy. We are trying dexamethasone for a few days because her soccer team just won the state championship and they are suppose to fly to New Mexico for the Farwest Regionals in 3 weeks and she is at 24k. I really don't want her to miss out, she has already had to give up so much. We bought the tickets and are hoping for the best. What has worked the best for your kids? Emmy responds great to 30mg of predisone but she doesn't want to take it anymore. Have either of your kids complained about body achs/soreness all over from tappering steroids?
Thanks, Shauna