long term ITP"ers

For the last 13yr's iv'e been dealing with thi ITP. Am I the only 1 that is be coming "numb" to the weekly cbc results and nplate injections? when my count drops below 10k, i Talk mt DR. into giving me some high dose decadron just so i dont have to go into the hospital for ivig. Dont get me wrong i receive the nplate and then he starts the roids asap and has me check back in 3 days for another cbc and it always comes up just enough. it's like i know before they do? I'm just so tired of going through the same ole thing week after week. and oh yea, if you want to go on vacation for a few weeks, thats another nightmare!Dont get me me wrong chin is always up and staying positve, but a the same level I could care less what the count is, i know there is a fix. Oh by the way I stumbled across this site yesterday, had no idea that many of us are out there

I use Nplate too. When I go below 10 I just use a higher dose of Nplate and have another blood test the next week. Does that not work for you?

I self inject but going on holiday is still a pain because the vials are supposed to be kept in a fridge. I tend to just hope that they are okay out of the fridge and so far seems to be okay.

Ann, check the web sites for insulin cases for your vials. They have several great options. I like and use the Frio brand for my pens. I recommend pulling them out separately in the bin instead of the tote when doing the airport security screening if you use a cold pack. the US docs are still reluctant to let us self inject. Winrho stopped working for me after 3 years and because of the business travel I do, the doc wants to go Promacta because they insist on the Nplate injections being in the office.

Scotto, yes, those of us who have done this for multiple years do get a bit frustrated when after many years we know the symptoms and need better than the doctors office seems to. When mine gets overly conservative, I have to tell myself that they've seen the results of people having had brain bleeds and have a reason for being cautious. That doesn't stop me from having an open conversation with them and we usually work out a compromise.

Hi Ann,

Here in the states (MI) we are not allowed to self inject the N-plate. Unfortunately, when it does drop below the 10k, standard treatment is to take a higher dose of n-plate and steroids and give blood in 3 days (it normally takes 3 days for the steroids to show results). As far as vacation goes, I go without having my cbc done for 2 weeks (I have done weekly) and hope for the best. It normally drops quite a bit and have to have the ivig in combination with the n-plate and steroids. Frustrating, but I have a great time and justify it that way:)