Questions About The Side Effect/reaction For Long Terms Of Romiplostim Use.

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Rafi Alfi Says:


My name is rafi Alfi, I’m 47 years old and I live in Israel.
I’ve just received my first Romiplostim injection and I’ve some questions about the Side effect/reaction for long terms to this medicine.
It’s a new medicine in Israel (I’m only the 14th who got it in the last 6 months so there isn’t much experience and the Israeli doctors could not answer my questions).

My History
2000 – CITP problem, Thrombocytes between 60,000 – 140,000 without bleeding problem, no treatment only monitoring.
2008 - NON-HODQINS LYMPHOMA CD20+ m/p diffuse larqe b – cell chemotherapy treatment.
3.2009 – self marrow transplantation in continuance to the LYMPHOMA treatment.
9.2009 – CHRONIC ITP with 3000 Thrombocytes, I’ve got the following treatments:
Several kinds of PREDNISONE in different dosage for several months with good reaction until it’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.

My Questions
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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