Hi everyone. I have a history of ITP (diagnosed in 2013) that is chronic and quite resistant to many treatment options. For years I was managed well on promacta (eltrombopag). My recent pregnancy was very difficult. I spent much of the first two months with platelets <10,000 and was hospitalized three times over the course of the pregnancy. During the second half of pregnancy, I received 30-60mg prednisone daily, biweekly IVIG at the highest dose, and weekly nplate injections, despite warnings of use in pregnancy. I delivered at 72,000.
My baby boy was born 12 days ago with a platelet count of 4,000. Since then, he has received over a dozen platelet transfusions and five rounds of IVIG. His counts range from 20,000 to 90,000, largely dependent on the platelets he is receiving. The doctors (at world renowned Boston institutions) have never seen such a limited response and we are in uncharted territory. They are now suggesting we try nplate which is not approved for use in children less than 1 year old. The doctors have never given nplate to an infant this young and can only find one case report in the literature.
Does anyone have any relevant information? Know of any families that were in this position, but results not reported?
Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
Thank you received: 519
I didn't even notice it was in 2 different categories am busy watching football on tv & talking to my bother on the phone again about our ageing father
Aliza here it is again
I found this paper@ www.ncbi.nlm.nih.gov/pmc/articles/PMC6595254/#B47 which states
"There has been 1 case report on the use of romiplostim for the treatment of neonatal alloimmune thrombocytopenia.(47) The infant received 4 doses of romiplostim (maximum dose of 3 μg/kg) starting at 34 days of life and was able to maintain stable platelet counts without any further treatment."
If you cannot access reference no 47 PM me. I have managed to download a pdf of it and could e-mail it to you
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