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Back in the hospital

  • libelder
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  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
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7 years 6 months ago #63015 by libelder
Back in the hospital was created by libelder
Woke up Sun with a blood soaked pillow, Jim drove me to the nearest ER for transport to UVA with no "detectable" platelets. 3 yesterday, but 0 again today. IVIG started at 10am today, oral dex., they're thinking about more Rituxin but I have Hep B antibodies so they want to titre for that 1st. I did not have it in screening before we married in 2010, not sure if it's possibly from the dose last week. Sad, a little scared, really missing that decade of remission from the Nplate. Man, I managed 30+ years with only 2 hospitalizations, and now it feels like "wham! Wham!! Wham!!". Dammit. OPM.
  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 6 months ago #63025 by D.Mann
Replied by D.Mann on topic Back in the hospital
Hopefully the IVIG kicks in quickly. Don't get too down, sounds like Nplate might be on the horizon again.
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7 years 6 months ago #63028 by johnmerrick
Replied by johnmerrick on topic Back in the hospital
what do you think brought on this last episode of low platelets?
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7 years 6 months ago - 7 years 6 months ago #63029 by Ann
Replied by Ann on topic Back in the hospital
Hello Lib, commiseration but I'm with you. I haven't been here for years either. Enjoyed a lovely sort of remission after Nplate but count on Monday zero. Back on Nplate but as it doesn't kick in for a few days taken some pred as well. Not as much as they wanted me to take of course but they are sneaky and want me back today for another count.

I know what caused my crash.. I had the flu jab last September which gave me artificially high counts for 6 months, now comes the crash. Three weeks ago I had a count of 220, Monday zero. Won't be doing the flu jab again.
  • libelder
  • Topic Author
  • Offline
  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
More
7 years 6 months ago #63043 by libelder
Replied by libelder on topic Back in the hospital
No clues to the crash beyond mind bending stress. DMann, why do you think the Nplate would start working again after such as epic fail?
  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 6 months ago #63060 by D.Mann
Replied by D.Mann on topic Back in the hospital
10 year remission from it before is my only guess. Did you mean that you were still taking the Nplate when this crash happened?
  • libelder
  • Topic Author
  • Offline
  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
More
7 years 6 months ago #63074 by libelder
Replied by libelder on topic Back in the hospital
Hey D. Yep, I was on the Nplate while crashing, as we upped my dose tenfold. I went from having a 110 dose hold me safe for years to hitting zero while on a dose of 1000. Anyway though, it seems like trying Fostamatinib is well worthwhile. I'm cautiously optimistic, a BIG change from a few days ago!
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