Hi again!
My mother's platelets never seem to drop below 10. She hasn't had platelets in the single digits since last June or July. I'd just like to know if she holds at 10 after 10 days or so to know that there has been some improvement in that line.
Her current cyclosporine dosage is 150 mg a day. Her current hematologist says that she has made good progress in one of the lines (neutrophils). That's why she has gone down from 200 to 150. She wants to slowly wean her off cyclosporine, while awaiting stabilization in hemoglobin and platelets levels. It could be several months yet for these two lines to come up. The neutrophils staying up over 1000 (average about 1100 or so) the past 12 weeks is a sign that the disease is pulling back. The doctors we're seeing now said that the other two lines will come up probably, but it's just still a waiting game. There is a lot of big rises and big drops in blood, and that is normal before stabilization. Platelets, she said, are the last line to usually stabilize, but that's not the case for everyone. My mother could be transfusion-dependent for several more months. And she always stresses that there are no guarantees. One line coming up after 6-9 months usually makes the case for the other two lines to come up. She said when no lines come up after 9 months, or there are no rises in anything ever, you start to think the horse-atg might not be working. She did say, though, that older people take much longer to get off transfusions (a year or so after atg, sometimes even longer).
So, in short, my mother's neutrophil line is considered a success. She just needs to have her hemoglobin and platelets to rise and stabilize.
Interestingly, she said my mother's hemoglobin could shoot up between 12-13 and stay there indefinitely. Or, she could stabilize in the 8's or 9's and slowly reach 11-12, or only high 9's or 10's in the end. She said you just don't know. It's not predictable. She did say that she wants her platelets to end up stabilizing over 50, preferably 70. She said you don't need to have normal platelets levels to be healthy.
We will be contacting Dr. Young's team at NIH.
Thank you so much for your advice. It is deeply appreciated.
Health and happiness to you.
