Hi All:
I have been silent for a few years, focusing on raising my son and not wanting to think ITP much if I can help it. Well we have a new board now I see and new members. Hi All! I got a new hematologist about a year ago now and I have had some developments that may provide something useful to someone else, so I will post.
I was diagnosed with ITP in 2006 during pregnancy with counts in the 30s (ish). No response to Pred, Anti-B led to Red Cell destruction and blood transfusions, no other good options during pregnancy. Speen removed during second trimester. No response. Baby deliver 4 weeks early by C-Section with platelet and red cell transfusions. He was fine, I was fine, we both went home 3 days later. With the transfusions my counts held about 40 for several months. Then they returned and settled in the 20s and 30s. I can almost always guess my counts with 5 so my hemotalogist agreed to watchful waiting. I come in if I am bruising in the "wrong" way and we test once a month.
Now for the current stuff. I got H1N1 last September. Following it my counts dropped into the teens. My current hematologist put me on Dec-Pulse. On the day I started my counts had recovered into the 20s on their own. No response to Dec Pulse, so now my Hematologist was worried and wanted another BMB (last one was in 06). This time she found my blood to be slightly hypocellular and found almost no signs of the cells that are the precursor to Platelets. She did another BMB to confirm, now they found none of those cells at all. At this point prelukemia becomes a big concern and we use other tests to rule out several types of cancer. My red cells are a little low and big too. Turns out I have persistence of fetal hemoglobin, which is hereditary and generally benign.
These results count as the "scary" BMB results for me, but I am posting because the current diagnosis is still ITP and am am actually starting to respond a little to treatment.
In an effort to determine if prelukemia was responsible, we tried another pred. treatment. This time my red cells responded and my platelets went up by 10, which is higher than I ever am without a transfusion. Not enough of a response to stay on the drugs, but a very good sign. The doctor believes that I have immune destruction of the pre-curser cells in my bone marrow instead of in the blood stream, which is why I hold transfusions for so long. We are going to try Rituxan to see if we can get sustained remission.
Mostly I wanted to post for those scared of the BMB or with strange BMB results. It is worthwhile, gets us information, and even the results we all dread can mean good things for us.
Live each day like its your first!
Tonie
