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TOPIC: Fostamatinib

Fostamatinib 8 months 1 week ago #66575

  • Christine
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My hema is leaving medicine and pursuing another career. My new one has said I may have to go on Fostamatinib an oral syk inhibitor ( apparently this has just been approved) I have been trying to find out info on it but can only find articles that are way "above my head" , so my question is: are there any articles out there put in general layman's terms or can anyone give me simplified info on the drug.
I am currently on Revolade 100 mcgs (?) with a gamma transfusion aprox once a month. It has been like this for a couple of years, I like to think if it "ain't broke don't fix it"
Thanks and high platelets everyone

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Fostamatinib 8 months 1 week ago #66578

  • b2h
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That is unfortunate about your hematologist leaving. I don't know much about Fostamatinib. The little I've heard or read didn't make it sound promising, so didn't do any research into it. However, it may work for you. It does for some. To me, seems like the better idea would be to find a different hematologist who will let you stay with the treatment that has worked for you for a number of years. Is that possible?

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Fostamatinib 8 months 1 week ago #66579

  • poseymint
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Here is the simple explanation from the manufacturer of fostamatinib/Tavalisse.
tavalisse.com/?gclid=EAIaIQobChMIwIPRwNKt4gIVAdVkCh0tYgQ_EAAYASAAEgLHl_D_BwE
My hematologist also suggested that I might want to switch from Nplate to Tavlisse. No thank you. I am happy that I've found a drug that works without noticeable side effects-Nplate, so no reason to experiment with a new drug. Plus Tavalisse costs $10,500 per month for the lowest dose and I don't qualify for the co-pay program. That said, my hemo said he has a few patients on Tavalisse and it is working for them. Its good to have options. I have heard that Tavalisse is 45% effective from trials and Eltrombopag/Nplate are about 80% effective- don't have those references, just what I've heard.
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Fostamatinib 8 months 6 days ago #66583

  • MelA
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Christine you said "My new one as said I may have to go on Fostamatinib..."

Why would you HAVE to go on it if what you are already on is treating you good??
I'm with you - if it ain't broke don't fix it!

Keep us posted!!
Melinda
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Fostamatinib 8 months 5 days ago #66588

  • mrsb04
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  • Diagnosed in 2014. I'm a retired renal specialist nurse
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Don't be forced into any treatment you are not sure of.
Fostamatinib isn't all it is cracked up to be in my opinion. 18% success rate in the trials. I was one of the 82% it did not work for. Still not licensed for ITP in the UK.

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Fostamatinib 8 months 5 days ago #66593

  • Hal9000
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For PDSA member 'Carcamoc10', her doctor is allowing up to 150mg Revolade/Promacta. See thread 'Need Advise Please :('

Perhaps going from 100 to 125mg is an option too? Keep the IVIG monster at bay.

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Fostamatinib 4 months 4 weeks ago #67385

  • sachmo16
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I am on Fostamatinib - have been for 4 years and it works for me. Platelets between 100 and 150 now. It took a while to work but I stuck with it.

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