Has anyone ever been treated with the (newer) ITP drug Fostamatinib? We will be starting soon.
Yes I am on this - I started on the trial 2 and a half years ago and my platelets have risen steadily since and are now at 116 - the highest they have been in a very long time. When do you start? Are you on a trial??
Thank you so much for responding!!!! My father has tried many different treatments for his very low platelets. We have been lingering between 8-20 for the past 3 years. He is currently on 12.5 mg of Prednisone daily and Azacitidine monthly. We are at Stanford.
In the past he tried Rituximab, Promacta (Eltromopag), and N-Plate.
Since the FDA just approved Tavalisse (Fostamatinib), his doctor wants him to try it, because every prior treatment either didn’t work at all to raise platelets or it worked (N-Plate) but caused bad side effects like increased blasts in the bone marrow or liver damage (Eltromopag).
As of now, Fostamatinib is FDA approved and patients are getting it prescribed to them. (At least here in Stanford, CA) Anyone else close to me, btw?
So, is your situation similar to ours? Last week platelets dropped to 6 and we had to have (another) platelet transfusion. 6 is the lowest we have ever been.
Any feedback you can share w me about your current experience on Fostamatinib? I’m so grateful to have found you.
I am in the UK and still on the trial as it’s not approved yet here. It’s the only drug that works for me, for 18months I was in and out of hospital having IVIG transfusions as they were constantly dropping to under 20 and got down to 4 - I tried 2 different other treatments one being rituxamab and they did not work and also they damaged my liver so when I was offered the trial I did not hesitate to go on it. It took a while for anything to happen and I was not hopeful but they then suddenly steadily started rising and hovered between 45 and 75 for a while, they are now as I said up to 116 which is amazing and I feel great. The only downside which is the same taking any drug is the side effects. I have learnt to live with it as I cannot bear the thought of starting again with a new treatment but you do get gastric problems. I manage it much better now through diet and just know what makes it worse - I do not eat big meals either as this does not help and just avoid food that could make you get an upset tummy. I know some people who were on the trial could not hack it but I have and it’s worth it, all drugs have side effects. Good luck and I would say give it a go!
Wow! Wonderful news and I cannot thank you enough with sharing your valueable insight with me!
How long did it take for you to see a bump in platelet count? 2 weeks, 8 weeks,... more? Just curious since you said it too a while to see a positive response.
Also, other than gastric issues, any other side effects such as liver function / damage? The reason I am concerned about this side effect is because that’s what caused us to have to stop Danazol a while back too. (Forgot to mention that Danazol was another drug we tried)
I’m so happy to have found you. Thank you immensely for your advice and guidance!!! It’s very much appreciated.
Also, from the very beginning of your struggles, did your platelets initially gradually drop over the course of many years? Or was it a sudden drop in platelets? For us, it was the former. It took a few years to get down to 10.
Hi - no my platelets suddenly dropped to 4 for no apparent reason - one minute I was fine and then I was covered in bruises and in hospital.
No liver damage for me with this drug, the others did which is why I came off them all. It took about 3 months to see a proper change in levels, but once they started going up they only went back down again if I got a cold or something and then they always drop.
The only side effects I have had are gastric, nothing else.
I would give it a go, stick with it and you will know quite soon if it works but give it a good go as if it works it will make a huge difference and life will start to get back
To some normality.
Fostamatinib (Tavalisse) in US with commercial insurance has very good price, its only 15$, but when you don't have commercial insurance or live in other country, it has wonderful hard price, its 9450$ !!! we must don't don't eat any things for at least one and half year to get one box of pills !!!
Hi I'm on N plate at the moment how does this new trial work ie oral or injection? Thanks good luck with it. Steph
Castle155 Nplate use as inject
Nplate worked great for my Dad when he was on it BUT we had to stop it because it was causing excess blasts in the bone marrow. I wish we could have stayed on it.
The new drug (fostamatinib) is a pill you take twice a day.
I thought Fostamatinab had failed its UK trials initial trials?
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