My daughter had 2 doses of IV SoluMedrol and 1 dose IVIG Feb 12-13 for platelet count of 1 and GI bleeding. Her prednisone taper finished March 9. Her platelet count on Monday was 379!!!!!!
The doctor says he does not realistically expect her count to stay up for a sustained length of time. With the IVIG alone her count was dropping within 2.5 to 3 weeks. The steroids are probably giving her extra time but time will tell. We are starting to plan for if/when they drop again, looking back even though her counts were sub 5 for at least 6 weeks the week before the GI bleed her symptoms were getting worse, really dark bruising, a lot of petechiae and a few blood blisters in her mouth. And since her platelets were in the under 10 area the fatigue was pronounced. Since she has already had two different bleeding issues they don't want her at those low levels again. They will probably use thrombopoetin receptor antagonist (TPO). He talked about both Nplate and Promacta (a shot or a pill). I am not sure which they would start with, at what counts or what the benefit of one verses another is.
I also told them about some upcoming things she has, she will be away for a weekend in early June and I am not sure the level of healthcare that will be available and senior prom is coming up. My daughter is pretty much a tomboy (I guess I am too), a jeans and sweatshirt kind of kid. When her counts were really low she looked like a cross between a hockey player and a prize fighter, really hoping to ward that off for the dress up day. Doctor was great, assuming she is not a treatment level yet has a plan going forward. I love when they listen you your concerns and work with you!
