Hi, my name is Kim and I new to this forum. I am 27 and last September I was diagnosed with Severe Neutropenia. Untreated my ANC is 0.1 -when treated with one round of 300 neupogen it tends to go as high as .3 -.5
I am here b/c no one knows why I have neutropenia. I have had a bone marrow biopsy - not much to tell, my bone marrow is doing its job, something is happening to the neutrophils after it leaves my marrow, but still no clue as to what is causing this. Tests have been run for RA, ANA, ANCA, Anti-granulocyte antibodies, and all kinds of vitamin deficiencies - all have come back negative.
I keep getting infections - ear infections, sinus infections, strep throat, oral ulcers - I take usually 2 rounds of a couple of antibiotics and the infection will go away. Also I ususally have to have a couple of rounds of neupogen to be able to fight off infections. The neupogen makes me feel horrible and not even hydrocodone makes me feel better - I start to shake very badly and my whole body hurts. I would prefer not to take anymore neupogen ever again, but as of right now I can't, or else my body won't be able to fight off the infetions.
I have been unable to find a neutropenia forum so I figured hematologic is the next best thing. Does anyone have any thoughts on what might be wrong with me?
Any thoughts at all would be appreciated.