Hi Hxmxsx,
My husband was the first MDS patient in The National Institutes of Health's clinical trial for Eltrombopag. He started in March, 2011 and stopped in July, 2012. It is a bit different from your husband's as Don was on no other MDS medications. They did a slow increase until he reached 150mg./day and once his platelets were over 100,000 they did a slow taper due to increased risk of clots with platelets over 100,000. Before that he had absolutely no response to Campath or Cyclosporine. The cyclo also caused potential kidney problems. The all-time low for his platelets was 4,000 and he received over 125 blood/platelet transfusions before taking Promacta. He still maintains his 100,000 range of platelets to this day and it also increased his reds and whites. He remains transfusion independent and has been for over 3 years and is on no MDS medications at all. It truly performed a miracle.
I have not heard of what Hopeful mentioned about a 12 week limit on Eltrombopag. NIH never spoke of a time limit other than the 100,000 platelet count although Don does not have an issue with monosomy 7. His chromosomal problems are trisomy 8 and deletion 20. They started the clinical trial for MDS because of the great success they had with their AA patients.
I hope this helps and I wish you the best. Please feel free to ask me any questions either on Marrowforums or my personal e-mail
address -
shcalvert3@aol.com.
God Bless,
Sally