My name is rafi Alfi, Iâ€™m 47 years old and I live in Israel.
Iâ€™ve just received my first Romiplostim injection and Iâ€™ve some questions about the Side effect/reaction for long terms to this medicine.
Itâ€™s a new medicine in Israel (Iâ€™m only the 14th who got it in the last 6 months so there isnâ€™t much experience and the Israeli doctors could not answer my questions).
2000 â€“ CITP problem, Thrombocytes between 60,000 â€“ 140,000 without bleeding problem, no treatment only monitoring.
2008 - NON-HODQINS LYMPHOMA CD20+ m/p diffuse larqe b â€“ cell chemotherapy treatment.
3.2009 â€“ self marrow transplantation in continuance to the LYMPHOMA treatment.
9.2009 â€“ CHRONIC ITP with 3000 Thrombocytes, Iâ€™ve got the following treatments:
Several kinds of PREDNISONE in different dosage for several months with good reaction until itâ€™s failed.
High dosage of IVIG, good reaction for 3 months and then failed.
MabThera, good reaction for 1 month and then failed.
Several kinds of PREDNISONE, finally without any reaction.
11.2010 - LAPAROSCOPIC SPLENECTOMY with a good reaction, up to 250,000 Thrombocytes for a month and then failed to 3000.
1. What is the longest time patient got the Romiplostim ? did any irreparable damage was involved ?
2. Is there any chance that the marrow will be damaged due to prolonged use of the Romiplostim ?
3. Do you know about statistics of Success/failures with the Romiplostim ?
4. Is it possible to stop getting Romiplostim once the Thrombocytes are stable in a reasonable level ?
5. Do you know about another medicine (maybe under development) that might be good for me ?
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