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TOPIC: Been a crazy 2 weeks

Been a crazy 2 weeks 1 month 2 weeks ago #68850

  • Kelirae24
  • Offline
  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
  • Posts: 308
  • Thank you received: 37
9 years ago I had a stroke when I started nplate I stayed on it on and off over the years becaysecaccording to my dr that’s what works even though I’m never stable I can be over 100 one week and 1 the next 3/24 I woke up witha horrible neck ache head ache and ear ache I could barely move then my hand went weak I couldn’t move it my mom
And husband called 911 I had 4 ischemic strokes and a clot was found in my neck the week before my counts were 4 so they gave me 300 of nplate that I never do well with and ivig when I got to the hospital my counts were 186 not crazy high but high for me I get migraines anytime my counts are over about 70 I was put on a blood thinner and my count crashes to cl zero in 3 days which caused those strokes to hemmorage so I had two brain bleeds they got my counts back up but was transferred to shands hospital and was released Saturday with a count of 200 it’s so much de ha vu 9 years ago my face and left arm went weak and dropped and am right back there it’s so discouraging

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Been a crazy 2 weeks 1 month 2 weeks ago #68851

  • mrsb04
  • Away
  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
  • Posts: 1467
  • Karma: 7
  • Thank you received: 374
So sorry to read this Kelirae
I hope you can manage to stabilise your counts with something. I know you've tried Eltrombopag (Promacta) before but it may be worth re visiting. It takes time to get the dose sorted but I find it more reliable than Romiplostim (N Plate) as my counts used to swing around like crazy the I was on that.

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Been a crazy 2 weeks 1 month 2 weeks ago #68852

  • ImPatient
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  • Posts: 66
  • Thank you received: 15
Wow that sounds terrible. There must be something that works better. Is this only one doctor who keeps telling you to take NPlate or is this what several doctors recommend for your situation? I prefer Eltrombopag, too, so far, but I don't know what your experience with it was and I'm pretty new to this.

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Been a crazy 2 weeks 1 month 2 weeks ago #68871

  • Kelirae24
  • Offline
  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
  • Posts: 308
  • Thank you received: 37
My dr is so set on nplate but I think will be trying promacta again I need something more stable these meds are trying to kill me

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Been a crazy 2 weeks 1 month 2 weeks ago #68875

  • mrsb04
  • Away
  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
  • Posts: 1467
  • Karma: 7
  • Thank you received: 374
You know your body better than anyone. Treatment should be a partnership between you and your doctor, who needs to respect that.

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