has anyone ever come off romiplostin and maintained a good platelet count

[NickyD]

I came off Romiplostim once but that was because my liver ALT enzyme shot up and was damaging my liver. My count went down as the liver count went down so I am back on Romiplostim hoping not to have the same side effect again with my liver. Are you on Romiplostim? How are you finding it?

NickyD

[Hidden]

i am waiting to have my spleen scanned to see whether a spleenectomy might work. whilst i am waiting my consultant wants me to start romiplostin but i dont want to be on it long term because i am desperate to have a baby. have you found romiplostin effective?

[paula1981]

my mom is now taking "cyclophosphamide" wich is a citostatic.

her platelets count is now fine (around 120).

she is suffering now liver problems, with pain in the stomach. But there's nothing that we can do, cause is the only treatment that raises her platelets count

we are from Chile, south america

sorry for bad english...

[sailor]

One of the patients in Germany who was on N-plate ( Romiplostin ) came off gradually and is now enjoying an acceptable count and no bleeding. Again the old and known fact, everybody reacts differently. Trial and error is often the only way forward. Sailor.