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Old Sun Dec 28, 2014, 12:29 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi Tara,

When cyclosporine was working for me, I was at 5.5 mg/kg/day. Currently, I am at a dosage that is below therapeutic levels ( 2 mg/kg/day), and my platelets are just slowly decreasing.

Your dosage does seem a little on the high level at 7 mg/kg/day. I know some doctors like to start at a high level to build up the cyclosporine level in your blood.

You could always have the discussion with your doctor about lowering your dosage to 300 mg/day for a few weeks just to see if it makes a difference in your nausea level. I use to have these discussion/trials all the time when I was at higher dosages

I think following up with a GI doctor is wise advice. I know it is overwhelming to have another yet doctor's appointments and procedure, but I am recently learning that there can be some GI conditions that cause hematologic disorders as well as some hematologic conditions/treatments that may cause autoimmune GI disorders. An endoscopy/biopsy is a quick, relatively painless, procedure that can give you insight into other potential causes of your nausea.

Hope they can find the cause!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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