[tedcapecod]

Hi Maureen, I am a 78 year old who recently entered a drug trial sponsored by Amgen. The trial drug is romiplostim used in ITP cases. My platelets have been between 12-16 for over a year, yet I am tranfusion-independent. I was hoping for a bounce in my platelet count. Instead my HG dropped 2 grams to 9.2, platelets are back to 12, my white count is up 2000 to 5.3, not to mention my MDS has progressed with 10% increase in peripheral blood myeloblasts. Not all trial drugs work. Good Luck!

Ted

[tedcapecod]

nancym, if blood clots ruled out,my guess would be diabetic neuropathy.i have exactly same symtoms with mds raeb2 in addition totype2 diabetes.i am on supportive care(aranesp) for 20 months.as sugar is controled symtoms subside somewhat. good luck. ted

[tedcapecod]

Hi Konglee,
I developed gout and type 2 diabetes after being diagnosed with MDS RAEBII. Your father’s symptoms are exactly like mine. I could barely walk for three months. Medications for gout affect sugar balance. I was treated for the diabetes with insulin and took colchcine for the gout. I now take allopurinol for gout as well and take 27 units of lantus insulin daily. I am convinced that the MDS caused the gout and the arthritis. Hope this helps.

[Author]

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