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Fostamatinib

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6 years 4 months ago #66575 by Christine
Fostamatinib was created by Christine
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
6 years 4 months ago #66578 by
Replied by on topic Fostamatinib
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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6 years 4 months ago #66579 by poseymint
Replied by poseymint on topic Fostamatinib
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.
The following user(s) said Thank You: Christine
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6 years 4 months ago #66583 by MelA
Replied by MelA on topic Fostamatinib
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
The following user(s) said Thank You: Christine
  • mrsb04
  • Offline
  • 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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6 years 4 months ago #66588 by mrsb04
Replied by mrsb04 on topic Fostamatinib
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.
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
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6 years 4 months ago #66593 by Hal9000
Replied by Hal9000 on topic Fostamatinib
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.
ITP Types and Treatments by HAL
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6 years 1 month ago #67385 by sachmo16
Replied by sachmo16 on topic Fostamatinib
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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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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