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Adults With ITP
Treatment - General
Fostamatinib/Avatrombopag combination is now Avatrombopag only
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Fostamatinib/Avatrombopag combination 4 months 4 days 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 4 months 4 days ago #72964

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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/Avatrombopag 4 months 4 days 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 4 months 3 days ago #72968

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Thanks, mrsb!

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Fostamatinib/Avatrombopag combination 3 months 4 days ago #73019

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

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Fostamatinib 3 months 4 days ago #73020

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Hope it starts raising your counts soon, mrsb!
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Fostamatinib 3 months 4 days 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/Avatrombopag combination 2 months 3 weeks 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 months 3 weeks 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 2 months 2 weeks ago #73045

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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/Avatrombopag combination 2 months 1 week ago #73047

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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 2 months 1 week ago #73048

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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 2 months 1 week 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/Avatrombopag combination 2 months 1 week 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 2 months 1 week ago #73053

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

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Fostamatinib/Avatrombopag combination 2 months 1 week 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 months 1 week ago #73055

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Here's hoping you get to your comfort zone soon.
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Fostamatinib 2 months 5 days ago #73056

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A much better count mrsb!  This ITP is just one big guessing game isn't it?!
Hope things settle for you!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Fostamatinib/Avatrombopag combination 2 months 2 days ago #73059

  • mrsb04
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Count now 5. Avatrombopag reinstated at 20mg on alternate days 

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Fostamatinib 2 months 2 days ago #73062

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Talk about a roller coaster - any thoughts on why your count jumped before?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Fostamatinib 2 months 1 day ago #73064

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OMG mrsb!  That's quite a drop!  I wish your doctors could find something that would put you in your safe zone.  You certainly are having a rough go of it right now.
I hope things even out for you soon, mrsb.
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Fostamatinib/Avatrombopag combination 2 months 21 hours ago #73067

  • mrsb04
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My count was 31 yesterday. Be interesting to see what happens tomorrow but doubt I'll get the result before Tuesday due to the 4 day  Easter weekend. I shall continue on my cocktail of Fostamtinib, Avatrombopag and weaning off Pred. 

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Fostamatinib 2 months 17 hours ago #73069

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What a yo-yo rebound!  Better than 5 though!  I hope they keep climbing, but not too high!

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Fostamatinib/Avatrombopag combination 2 months 15 hours ago #73070

  • mrsb04
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Target count is >50 which is fine by me. 

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Fostamatinib/Avatrombopag combination 1 month 4 weeks ago #73082

  • mrsb04
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Count now 134. Avatrombopag reduced to every 3rd day
 

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Fostamatinib 1 month 4 weeks ago #73083

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Wow!  That's a good count, but I know you're more comfortable in the 50 range.
Happy Easter!

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Fostamatinib 1 month 4 weeks ago #73087

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Well that is much better mrsb !!
Hope that new count is just as good or even better!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Fostamatinib/Avatrombopag combination 1 month 2 weeks ago #73107

  • mrsb04
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A count above 800 is not what I want.!!!!!!
Avatrombopag on hold. Weekly bloods continue 


If anyone knows how to move a topic  into the correct category please let me know. This should be in Treatments General not Newly Diagnosed 

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Fostamatinib 1 month 2 weeks ago #73108

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Seriously mrsb your count is above 800??
You are a mystery woman for sure - what is going on, bless your heart!!!!!!!!!!!!!!

[I'd click on Report to moderator below, it is above the Quick Reply  Reply  Quote buttons - as them to move this to the Treatments General section]
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Fostamatinib/Avatrombopag combination 1 month 2 weeks ago #73109

  • mrsb04
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Thanks Melanie I have done as you suggested. 
Consultant thinks I must  be extremely sensitive to Avatrombopag. Now taking baby Aspirin until count lowers  

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Fostamatinib/Avatrombopag combination is now Avatrombopag only

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