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N plate dosage 6 months 2 weeks ago #72095

  • sonyalea
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Thanks for your help. I started on NPlate last year after my platelets plummeted to 11k, and these treatments failed—Dex, Prednisone, Rituximab, and Revolade. Even IVIG is very difficult with migraines, and sometimes anaphylactic shock. My dose is about 3/4 of a 250 mcg vial, or about 180 mcg. This results in platelets between 100 - 250k. My insomnia is very challenging, and I'm losing several nights of sleep each week, along with joint pain, and of course, fatigue. I'm trying to see if I can reduce this dose to get to a platelet result of 60-100k with less side effects, but I also lead an active life, and don't want to put my body in peril from a fall. I'm considering splenectomy once the covid crisis here is over. I'm wondering if anyone has looked at dosage with N plate, and had success at decreasing side effects?
Sonya

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N plate dosage 6 months 2 weeks ago #72096

  • 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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sonyalea
I never managed to keep a stable count with Romiplostim but if I were you I would definitely titrate the dose down and see what happens.
Have you got Avatrombopag in Canada? Can you get onto any drug trials? 
I would think very seriously about a splenectomy  and research risks associated and duration of response. 

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N plate dosage 1 month 3 weeks ago #72413

  • Suzana1995
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,  started with NPlate in December 2021, I receive Nplate once a week, since May 31 I have not received any dose, 4 days ago platelets were 342,000, the dose of the drug varies depending on the platelet count, the last dose was 50mcg. I was admitted to the hospital with 1000 platelets and without a reaction to dexamethasone, methylprednisolone, intravenous immunoglobulin

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N plate dosage 1 month 3 weeks ago #72414

  • Suzana1995
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      I'm new here, first day at forum, and English is not my primary language
      Sorry.

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