Where to look next?

My mother is being treated for ITP. Several months ago, she was Rx'd Indocin (Indomethacin) for what looked like gout. She wasn't told to discontinue any other NSAID treatment, and 10 days into the 20 day RX, she was so ill she wasn't able to walk. When she was taken to the hospital, she had a platelet count of less than 20,000. A bone marrow biopsy showed that her bone marrow was clear, and they gave her a diagnosis of ITP. Prior to that, she'd never had a blood-related issue. Although,

Since October, she has had steroids, Rituxan, IvIG, WinRho, Promacta, a splenectomy, N-Plate, N-Plate plus Rituxan and most recently Cytoxin. Her platelet count hasn't risen above 9,000, and even with multiple infusions of platelets, she can't hold a count for more than 6-8 hours without having them fall again.

A repeat bone marrow biopsy showed changes in the marrow which was first thought to have been evidence of a Myelodysplastic syndrome, but upon further evaluation, looks more like the changes that one would expect after the medications she's taken.

Yesterday, her MD said that unless the Cytoxin works, they are out of ideas and would like to find a research hospital that can take her. I'm wondering if anyone has any suggestions about what we might be missing. She is bring transfered to the Hospital at University of Pennsylvania tomorrow, because they have a clinic there for non-cancer blood disorders, but I'm flying blind trying to learn everything I can about ITP over the last three months and so far, we've had ZERO success.

Any suggestions are warmly welcomed.

Doug Cines at UPenn is an ITP expert, so hopefully you will be seeing him or one of his colleagues. www.med.upenn.edu/apps/faculty/index.php/g5455356/p14184

I'm sure others will chime in with thoughts on different treatments (or giving the treatments that have been tried some additional time).

How old is your Mom? How are her symptoms?