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Update on NPlate 9 years 3 weeks ago #43672

  • firkins
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  • Posts: 139
  • Thank you received: 18
Hi All -- thanks so much to everyone who weighed in as we were headed for my daughter's first N'Plate injection.

So far, so great, and I just wanted to pass this news on as I don't think too many kids are getting N'Plate, so perhaps it's helpful to hear from those who have.

She got her first dose about a week ago, and we went back yesterday for second. Her counts were 204! holy moly. (That was just from the N'plate shot, as I didn't given her any steroids during the week despite her low counts). She's tolerated it very well with no apparent side effects. Our hematologist says when we get settled with this, some reliability, we can do the injections at home which will be easier (my best friend is an oncology nurse). Doctor also said she is having great results with NPlate for kids with ITP for whom nothing else has worked. I know its expensive and not everyone's insurance pays for it (we are lucky with that), but I just put this out there.

My daughter still wants to do one more round of rituxan (her third). But we will wait until March with the hope it can give her a platelet-FULL summer as she hopes to do a community service project out of the country.

I can tell our doctor is circling around the splenectomy so that may be something to consider in the future. I hate to have her lose her spleen -- argh -- and she is definitely not there at all. On the other hand, I hate pouring all these powerful drugs in her body. We are lucky, I know, that some of these drugs help her and actually DO raise her platelets, but I always worry about the unknown, hidden cost.

Wishing high platelets for all your kids.
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.

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