I am pleased to report that, as of this Thurs., 7/5, my husband will come off Promacta. Once his platelets went over 100,000 they started a slow taper from 150mg., dropping the dosage 25mg. every 2 weeks until his last dosage, which was 25mg. - trying to get those stubborn platelets below 100,000.
His platelets today were 121,000. Also during the time he was on Promacta - which he started 3/11 - his reds reached the normal range for the first time since 11/08. You can read his history in this clinical trial at the start of my other thread under "Clinical Trials" named "New Promacta (Eltrombopag) clinical trial at NIH" as well as a little history in this thread. He virtually had no side effects that we know of - he tolerated the Promacta very well.
They will do CBC's every 2 weeks to monitor the situation and we go to NIH on 7/17 for a scheduled BMB but we don't expect any surprises.
He was the first MDS guinea pig for Promacta at NIH and I think he will be Promacta's star MDS patient.
If anyone has any questions regarding this treatment or NIH please feel free to contact me.