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Fostamatinib

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5 years 2 months ago #69585 by Christine
Fostamatinib was created by Christine
My Hemo is going to put me on Fostamatinib and I was wondering if any other person has tried it and what to expect? I have read the info on this site and it looks quite promising. Thanks in advance.:) :) :)
5 years 2 months ago #69587 by
Replied by on topic Fostamatinib
It didn't work for me. I think just see how it goes. Good luck!
  • 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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5 years 2 months ago #69594 by mrsb04
Replied by mrsb04 on topic Fostamatinib
Christine
The link below is worth reading. There were 2 trials FIT1 & FIT2, which showed only 18% of participants achieved a stable response.
I was part of the FIT2 trial 5 years ago. For the first 8 weeks I could have been on a placebo as it was a randomised controlled trial, but for the remainder I took the real thing, initially at 100mg twice a day for 4 weeks and then 150mg twice a day for the remaining 14 weeks and saw no benefit from it at all. Mind you I had no side effects either. Another lady at my clinic was also on the trial. She had a slight response but unfortunately it did not last.
ashpublications.org/blood/article/133/19/2027/273805/Fostamatinib-for-the-treatment-of-chronic-immune
The following user(s) said Thank You: Christine
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 1 month ago - 5 years 1 month ago #69623 by Hal9000
Replied by Hal9000 on topic Fostamatinib
How are things Christine?

I have in my notes that once upon a time you were taking 100mg of Promacta (and have taken a bunch of other things). There is one person I know through PDSA that has had good results with Fostamatinib, aka Tavalisse. But I have to mention how they got there. They got there by taking both Nplate and Fostamatinib together from the get-go. As counts went up, Nplate dose was lowered. The dose of Nplate now is very, very small. As I recall, less then a '1' dose.

I have to wonder if taking either Nplate or Promacta with Fostamatinib will get you where you want to go - platelet nirvana.
The following user(s) said Thank You: Christine