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Fostamatinib
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Fostamatinib 1 month 4 weeks ago #72962

  • mrsb04
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My platelet count on 27th January taking daily 10mg Pred and 25mg Eltrombopag was 12. 
Fostamatinib on the NHS has been available in Scotland for 2 years and is now, at last, available in England (and I presume Wales).  
Alongside 5m Pred/day it kept me reasonably  stable during the trial 7 years ago so here's hoping it does so again. Have started on 100mg twice daily. 
Who knows one day I might get off Pred altogether.

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Fostamatinib 1 month 4 weeks ago #72964

  • CindyL
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Was your count in the double digits, mrsb?
I get confused by all the different names for the treatments.  I wish all the countries would agree on one name!
I do hope you get off the pred permanently!

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Fostamatinib 1 month 4 weeks ago #72965

  • mrsb04
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CindyL
Yes count was 12. Sorry I got distracted by the dog having a hissy fit about a pigeon being in his garden.
I have edited original post as also failed to state  I have actually  started Fostamatinib!!!! 
I agree with the confusion. The problem is caused by brand names chosen by the manufacturers. All drugs have a generic name which is generally the same world wide, e.g. Promacta in USA, Revolade in UK generic name for both is Eltrombopag. 
 
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Fostamatinib 1 month 4 weeks ago #72968

  • CindyL
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Thanks, mrsb!

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Fostamatinib 4 weeks 1 day ago #73019

  • mrsb04
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Dose increased to 150mg twice a day from this morning. 

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Fostamatinib 4 weeks 1 day ago #73020

  • CindyL
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Hope it starts raising your counts soon, mrsb!
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Fostamatinib 4 weeks 13 hours ago #73021

  • MelA
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Ditto what Cindy said!!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Fostamatinib 2 weeks 1 day ago #73032

  • mrsb04
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Update
Last Friday my count was 48.
Current meds; Fostamatinib 150mg twice a day, Prednisolone 4mg daily and Avatrombopag 20mg weekly.
I am not tolerating the increased dose of Fostamatinib as well as the 100mg one, and am having to take Metoclopramide regularly to combat the nausea. 
I see my consultant again in 2 weeks. Spoke to her on the phone earlier this week,  she has increased Avatrombopag  to twice a week and is planning to reduce Fostamatinib back to 100mg when I next  see her. 

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Fostamatinib 2 weeks 1 day ago #73033

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Counts are good but it sucks that you can't tolerate the dosage.  Hopefully when your dose gets reduced, that part will get better and still maintain the count.
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Fostamatinib 1 week 14 hours ago #73045

  • MelA
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Another week till you see your consultant, right?  Will be interesting to see if the increased Avatrombopag has helped.
What are we going to do with you ;)    Sorry to hear the side effect of Fostamatinib is causing trouble!   Take care & keep us posted please!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Fostamatinib 1 week 9 hours ago #73047

  • mrsb04
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 Avatrombopag is now on hold as the increase in dose sent my count over 400. 
Count repeating  tomorrow 

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Fostamatinib 1 week 4 hours ago #73048

  • CindyL
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WOW!  That's quite a jump!  Hopefully your doctor(s) can get the correct dosage for you soon!
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Fostamatinib 6 days 14 hours ago #73049

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Good heavens mrsb - you win the prize - oh my word!   Bet you never thought you'd see over 400k!!
Let us know what tomorrow brings!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Fostamatinib 3 days 7 hours ago #73052

  • mrsb04
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Count down to 243, Avatrombopag on hold until it is below 150.
As planned Fostamatinib reduced to 100mg twice daily, and Pred down to 3mg/4mg alternating for a couple of weeks then down to 3mg daily. 
Continuing  with weekly bloods and back to clinic in 3 weeks. 

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Fostamatinib 3 days 4 hours ago #73053

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Are you comfortable with that number, mrsb?  How are you feeling?

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Fostamatinib 3 days 4 hours ago #73054

  • mrsb04
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Cindy
I'm always twitchy with a count above 100. All those big juicy platelets circulating around my system. 
Physically I'm fine. 

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Fostamatinib 2 days 5 hours ago #73055

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Here's hoping you get to your comfort zone soon.
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Fostamatinib

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