Quote:
Originally Posted by evansmom
Hi Laura,
After all you've been through, this is just plain not fair. I cannot blame you for your feelings of despair and frustration, I'd feel the same way and would be equally as worried.
I cannot help but wonder what your chimerism is. I'm trying to remember how much donor versus you your marrow was at last check? I wonder if the budesonide was just enough steroid to keep that chimerism in check and without it, your cells are beginning to dominate. It's so hard to know and I'm just throwing out ideas. How are your white cells? If they are normal/unaffected, I'd be leaning more towards autoimmune platelet destruction. Treatment for that also includes steroids and other agents like Rituximab. So there again, the withdrawal of your steroid could be implicated. I'd almost be tempted to ask the doctors to put you on some prednisone as a possible rescue out of either of these two scenerios.
So you want to know if all of your other counts are stable, if you have an anti-platelet antibody developing, what % you versus donor you are and maybe some prednisone in the interim for good measure.
These are just my thoughts as I put myself in your place and think as though Evan were dealing with these issues, what would I want done.
Please keep us posted, we are all thinking of you at this difficult time.
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Nicole,
Please throw all ideas out there...no matter what...I greatly appreciate them.
My last Chimerism a YEAR ago (because "it is worthless to keep checking it") was 60% donor and 40% my own. They said they were going to check it again...but not sure if they did...will have to push for it. The Budesonide theory is a good one.
The only thing affected is my plts and MCV. The rest are all normal. The lymphs are a tad high too. I am tempted to run up to Mayo tonight and check and see what the results are from the antibody to the plts they drew. I would rather do Rituxan than keep on steroids...but that is my personal opinion without really knowing too much about it.
Again please throw out your thoughts on what you would do/think if it was Evan. I greatly, greatly appreciate your opinion! I take ideas and look into them and present them to my doctors. I find it very helpful for the ideas.
I will check into the stuff and get back to you.
Laura