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I have an announcement!

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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1 year 8 months ago #73204 by midwest6708
I have an announcement! was created by midwest6708
With my count at 233 this morning and my NPlate dose at a mere 10 mcgs (total dose, not mcg per kg), my MD recommended I stop taking it altogether.  So that's what I did!  The hope of being in a true remission has made me giddy.  Even if it's not "remission" per se, just maintaining a stable enough count to not need treating is a big blessing.  

Ever since Feb of this year, the count has been mostly stable despite the gradual lessening of the dose.  If anyone was to make me speculate about what happened, my guess would be the two back-to-back steroid dose-paks I had for an unrelated problem at that time perhaps "shocked" my system somehow.  Before the first pak, I was still careening from 114 to 37 in a week's time with no change in NP dose of 50.  After the second dose-pak, I haven't budged out of the mostly mid-100s, with a couple of 200s in the mix.  

I bet the office nurses will be glad they won't need to mix such an impossibly tiny dose anymore.  I will still need weekly CBCs for a while, but I'm still pretty pumped at this turn of events.  
There aren't too many people in my life who would even understand what all my fuss is about.  I know you do, so thanks for listening.  

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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1 year 8 months ago - 1 year 8 months ago #73205 by mrsb04
Replied by mrsb04 on topic I have an announcement!
Great news Janet. Long may it last.
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1 year 8 months ago #73206 by CindyL
Replied by CindyL on topic I have an announcement!
Congratulations Janet!
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1 year 8 months ago #73207 by MelA
Replied by MelA on topic I have an announcement!
Janet that is fantastic!!!  Very happy for you!!
But - you must keep in touch with us :) 

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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  • Lman
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  • We cannot change the cards we are dealt, just how we play the hand.
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1 year 8 months ago - 1 year 8 months ago #73208 by Lman
Replied by Lman on topic I have an announcement!
That is so nice to hear!!
I had the same experience last year after I was hospitalized with a dose of 7 MCG/KG and a single-digit count (due to what was really a very minor cold). They pumped in everything (IVIG, Methyl pred, Platelet bags) + me going crazy with Nplate overshooting before hospitalization to hopelessly avoid that. That allowed me to reduce the dose a little bit after I was released. I believe in the miracle of shocks :)

I was wondering how long you were on Nplate and what was your dose reduction timeline.

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  • GrouchoMarx
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  • I would never recommend an illness that choses people like me.
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1 year 8 months ago #73210 by GrouchoMarx
Replied by GrouchoMarx on topic I have an announcement!
Will you be blessed indeed
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