Romiplostin/Fostamatinib/Remission

[Sachmo16]

Hi everyone - I have recently been taken off Fostamatinib after 4 years on trial with it, it has now been approved as an ITP treatment but I have told it is too expensive for me to continue on it now it’s licensed - this has been very disappointing as I have given 4 years of my life and time too doing the trial for then and sticking with it when many others didn’t and have now been booted off the drug that worked very well for me. They have now started me on Romiplostin - I am a month in and my platelets yesterday were 500 - so far far to high and I’ve stopped the injections. I have had really bad pain in my arms since I started on this drug - it’s not in my bones the pain but in the muscle at the top of my arms - has anyone else had any side effects from this drug? I also take hydroxychloriquine for SLE/Lupus and have sore joints in my hands snd wrists when I have a flare up but this arm pain is totally different. I’m not taking Romiplostin now so hopefully the pain will completely go away if it is caused by this drug and am hoping my platelets drop but remain at a level whereby I don’t need further treatment for ITP - has anyone else experienced remission after taking Romiplostin?? Thanks any advice would be welcome!

[Robert1959]

Yes I was treated with Romiplostim (NPlate) and have been in remission for 6 years now with a totally normal platelet count - it was a miracle drug for me. You have to be very careful on the dosage amount as it is a very potent drug and small amounts can have a big effect on your count - I once got to 1100 but thankfully didnt have any dramas. The only side effect I experienced was a constant mild headache.Best of luck. Robert.

[Sachmo16 in reply to Robert1959]

Thanks Robert - great to hear that you have been in remission for so long! 😀

[Lynney11]

I was on Romiplostim for 3 years and my count was a constant 50-60, not enough to be called remission! I started taking Eltrombopag tablets in 2017 and last week my count was 172. It has been over 100 for about a year now, so I will stay with the tablets for the foreseeable future.