Treatment with Fostamatinib

[JigSaw63]

I am potentially going to now be treated with Fostamatinib and I would like to know if anyone has any experience with this medication. I know it is fairly new and would like to know anyone's thoughts on it

[Sachmo16]

I was on the trial fostamatinib for 4 years - I was taken off it when Covid hit - it worked for me and really did not want to be taken off it - apart from initial gastric side effects it was easy and kept my platelets stable and I always new where I was - I was put on romiplostin which has worked but I prefer fostamatinib as I get real highs and lows with romiplostin. Am hoping I can go back on it as it’s now been licenced. Good luck - hope it works for you

[JigSaw63 in reply to Sachmo16]

Thank you that sounds very positive. Did the gastric side of things sort itself out or did you have to take other medication?

[Sachmo16 in reply to JigSaw63]

I just had to manage it as the drug was working and I couldn’t face trying something new - all the drugs have side effects so I just wanted to stick with it and see if I could live with it - Certain foods (dairy, cheese) made it worse for me so I just tried to cut back and eventually it got better - I know many people on the trial stopped it because they couldn’t deal with the gastric side effects.

[JigSaw63 in reply to Sachmo16]

Good morning Sachmo16

I know its been a while but I just thought I would let you know that after trying Avatrombopag for 4 weeks and it not working very well I am now on Fostimatinib and Avatrombopag and the results are good - so far! My platelet count went from 9 to 196 in 3 weeks 😊. At the moment I don't have any side effects and I'm really pleased about that as I was not looking forward to the gastric side of things. I don't know if side effects start quickly or take their time but so far I'm doing okay 👋

[Sachmo16 in reply to JigSaw63]

hi - that’s great news. What dosage of fostamatinib are you on? I am now back on it and was on 200mg a day -

[Sachmo16 in reply to JigSaw63]

- that’s great news. What dosage of fostamatinib are you on? I am now back on it and was on initially 200mg a day but within a couple of weeks the gastric side effects were too much and I couldn’t deal with it - I’m now on 150mg a day and the side effects are much better….still not great but manageable. I have though been exhausted and so fatigued - I am not sure if this is my body getting use to it again but am thinking I should have just stayed on romiplostin - my platelets now are in the 50’s and before when I was initially on fostamatinib they were around 100 but with the lower dosage maybe that’s as high as I am going to get in the 50’s. I’m going to give it another month and if I’m still exhausted then might look at going back on romiplostin….

[JigSaw63 in reply to Sachmo16]

I'm on 200mg daily and 40mg of Avatrombopag. No fatigue. I am on some iron tablets and they can have the opposite effect of gastric problems! Perhaps all 3 tablets are some how working together for me and keeping things good. My Consultant is reducing the Avatrombopag to 40mg over 5 days instead of 7 and the iron is being reduced to 3 days instead of every other day so I'll have to see if this has any affect on (a) side effects and (b) platelet count 😏

I'm sorry to hear it's not so good for you this time. Finding something that works is such a trial and error at least you can go back to romiplostin if necessary. I was almost running out of options so I really hope this works out for me 🤞

[holcotts in reply to Sachmo16]

Quick question...Highs and lows platelets wise or mood wise?

[Sachmo16 in reply to holcotts]

highs and lows platelets wise - they rise to over 300 and then fall sharply and I then inject again - With fostamatinib they were around the 100 mark consistently

[Mels73]

weird coincidence… my consultant told me yesterday that this was my new treatment after failure with both Revolade and Nplate… he mentioned it was a really new treatment so was a little worried about it! Be interesting to hear how you get on with it. I’m really hoping this will work for me, hope it does for you too! Good to hear it works for some people but worried about the gastric side of things…

[JigSaw63 in reply to Mels73]

I am too but I've got to try it. Revolade has worked for me for 6 years. They say it is still working but my antibodies are running rife! Good luck to you too

[Sachmo16 in reply to Mels73]

give it a good go and if it works hang in there. I wanted to come off it lots of times but stuck with it and it does get better - so much so that I am trying to be put back on it!

[conquerator2]

I can't speak for Fostamatinib, but I believe it is similar to Rituximab which I've been on successfully for almost 3 years now. It's a much older, tried and tested treatment that might also be worth a shot. I don't observe any side effects myself, though it does deplete your antibodies, so you don't create new ones and might be more susceptible to infections. Which is a risk I am willing to accept for now, in exchange for normal platelet counts

[JigSaw63 in reply to conquerator2]

Hi, I've asked if I can try Avatrombopag instead of Fostamatinib as it is similar to Eltrombopag that I am currently using and has fewer severe side effects. It's only recently licenced in England though so am waiting to get it. It's so good that these new options are, at last, coming through

[hassell83]

I have just started Retuximab