Follows is a post about my time with ITP, the different treatments I underwent, and where I stand now (which is good!)
I was diagnosed at 19 years old when I went to the ER for a heart condition. They found the low platelet count when they ran a procedural CBC. The nurse came up to me telling me one of my labs came back highly abnormal, that they were sure it was just a mistake, but had to re-check anyways. She told me my platelet count had come back at 17k. An hour or so later, the repeat labs came back at 9k. I developed a severe headache while they stuck me in a hallway, waiting for a room to admit me, my mother threatened to take me home AMA, and then I was admitted after a head CT (which thank goodness came back clean). No one believed I could have survived those counts because I was a competitive figure skater, where falling HARD happens hundreds of times a day. I had no symptoms--no bruising, no petechiae, nothing.
I had a bone marrow biopsy and abdominal CT. They started me on a very strong steroid and were going to start IViG, but my counts rebounded quickly with the steroids. I was discharged after a week.
My initial hematology appointment showed stable counts, but within 2 weeks I had petechiae, and by the time my follow up came around, my counts were 20k and I was put on prednisone. I was on and off the prednisone for about 6 months before my doctor finally accepted that, while I responded well to prednisone (at least in terms of platelet counts), my counts would keep dropping when tapering off of it.
In late September/early October of 2009 I started treatment with Rituxan, wanting to save my spleen (splenectomy was the other option). The four weeks were easy--minimal side effects, quick response, and I was able to compete at national's qualifiers late October. I was also able to have the heart surgery I needed to fix the cardiac condition that landed me in the ER and probably saved my life, since I would otherwise have returned to the ice the next day and who knows what kind of internal bleeding might have happened with all of the falls skaters take.
My counts stayed excellent until November or early December of 2012, so I had 3 years of remission. I went in for a pre-op appointment for hip surgery (yes, at 22 years old), and my counts were around 80k. My surgeon was not comfortable performing the surgery, so back to hematology I went.
We started treatment in December with IViG. The day after the infusion, I was admitted to the hospital for a week for what the doctors say was bacterial meningitis. I still think it was likely aseptic meningitis caused by the IViG, but who knows. My counts went up, but dropped quickly.
Next I tried Rhogam/WinRho, and had some unpleasant body aches, but my counts responded. And then dropped. Again. But, I was at least able to have my hip surgery.
January-March was watch and wait time. My counts were trending downwards, but my doctor was hoping they'd stabilize. Finally, when they dropped below 30k, we went back to the Rituxan.
Rituxan did not go so smoothly this time as I developed SEVERE muscle AND joint pain from the infusions, but it worked its magic.
After one infusion, my counts were 189
Second infusion, 133
Third (April 5), 122
But by the end of April I was in the 200k range.
They've dipped up and down since, peaking at 389 (!!!!!!!!) in the middle of November, with a "low" of 260 just a few days ago.
I'm hoping for a few years of remission, at least, and my numbers are certainly encouraging.
Just wanted to share some positive news
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