Eltrombopag (responses in children ITP)

My 4 year old daughter had been taking eltrombopag since March. Prior to this she tried rituximab and prednisone with no success. Platelets had always been single figures since diagnosis in march 2015 (count was 12-16 with prednisone). Her platelet count has slowly increase over the months with her highest count being 44. However she complains of headaches and tummy pain daily. I understand from the local hospital most of the children they see have had a better response and none of these side effects. Has anyone else had a similiar experience?

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  • Hi, my brother was on eltrompbopag as well and would complain about the same thibgs also he would say his eyes felt irritated. Eltrompbopag seened to work quite well on him however after a couple of months uts effects stopped and his platelets dropped rapidly.

  • She does complain about her eyes too. I'm beginning to wonder if the side effects are worth it

  • What I personally say is if it is working go with it, id much rather sore eyes than splenectomy

  • hello- i take eltrombopag was 50mg now 25mg and i have had stomach pains/nausea since taking them! i have found taking my tablets really early when i wake 5/6am reduces he nausea feeling compared to taking them later in the day!

    re: eye pain, i haven't had this symptom. sorry!

  • I have been taking it for a year now - it really pushed the numbers up for me and seems to be the only thing they have tried so far that works! Unfortunately the side effects are really rubbish for me; bone/joint/muscle pain, hair loss & dihydrosis (they weren't consistent in terms of intensity or an everyday occurrence) though no nausea or eye issues. I did notice after seven/eights months the side effects were not so severe as when I first started, pains e.t.c. settled a bit more/became more sporadic and I guess I got used to dealing with them quickly. Everyone reacts differently! Maybe try taking the pill just before bed (what I do), some people have said it helps as they can sleep through some of the side effects.

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