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Anyone have idiopathic pancytopenia?
Blood Cancers & Disorders | Last Active: 4 days ago | Replies (39)Comment receiving replies
I have CVID and Lupus and my labs are now trending towards pancytopenia. I call it all FLD Syndrome (feel like dirt! everyday. just feel weak and sick). The low numbers have been going down the last few months as I’ve been feeling more fatigue - the ones I’ve posted are from yesterday. I sent them to my rheumatologist and immunologist; in the meantime I am curious how you are doing this summer, and what has helped you? Also wondering what others have experienced with the diagnosis and treatment of this. Many thanks!!
Replies to "I have CVID and Lupus and my labs are now trending towards pancytopenia. I call it..."
@janebaxter
Jane, those numbers point toward a mild-moderate pancytopenia. Your normal BM biopsy, Absolute GRAN% - 0, and all low-normal readings suggest your bone marrow is working adequately to push out the new cells, but suggests your body isn't prcessing them properly. Has your spleen (enlarged or dysfunction) been checked? Your liver (chirrosis or other)?
I'm curious about your BM Exam Report's (Bone Marrow DIFF) findings on the blood characteristics makeup... Promyelocytes, Prorubricytes, Rubricytes, Metarubricyte (METARUB), Megakaryocytes (Presence or not), and Blasts. If you have no "blasts" (cancer cells), that's a good thing.
You may need Autoimmune and Hemolysis Panels: ANA (Antinuclear Antibodies), Direct Antiglobulin Test (Coombs Test), and important Hemolysis tests like LDG, Haptoglobin, and Billirubin. Good luck.
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@janebaxter this summer I still don’t need infusions of plateletes but I do need injections of neupogen when I’m below 500
Plateletes went to 27,000 now 43,000!
They found two mutations from a biopsy in Feb that possibly could become MDs Myelodysplastic syndrome someday
Praying to outlive that
I do get tired after 2 pm
But can garden bike and do housework