Anyone have idiopathic pancytopenia?

@loribmt Thank you for your support. I am thinking about making an appointment with Mayos to see if they can help. 250 miles away. Happy New Year.

@harleewine Requesting an appointment with Mayo Clinic is an excellent idea. Of course, admittedly, I’m a bit biased because I wouldn’t be alive today without the outstanding care I received at Mayo. Their hematology departments are 2nd to none. I live about the same distance from the Clinic as you mentioned…250 miles. It was well worth the trip.
To help get you started, here is a link to Mayo’s home page where you can follow the prompts to request an appointment. http://mayocl.in/1mtmR63

There are 3 locations: Mayo-Rochester MN
Phoenix AZ or Jacksonville FL. You’re able to specify which campus would be your preference when you fill out the request.

Wishing you a Happy, Healthy New Year. Will you let me know what you find out please?

I probably need to check with my insurance carrier but I am at the point in my life that I need to do some more investigating about my conditions.

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!!

@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

@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.

Thanks, I get monthly IVIG infusions which seems to throw the ANA. My Rheumatologist has ordered more labs, so I will follow up soon.

@janebaxter Your only medical practioner for this is a rheumatologist? Ideally, you should be seeing a Hematologist-Oncologist to be safe given the complex bio/morphology of your case. That's especially true if you've already had a bone marrow biopsy. I would have expected that doctor to order one.

I have an immunologist for the hypogammaglobulinemia and a rheumatologist at Johns Hopkins. My immunologist has referred me to a hematologist and I'm in the process of getting that scheduled at the Lombardi Cancer Institute at Georgetown. I have a call with Mayo next Thursday, as well. I haven't had the BM biopsy yet - you may have been looking at Joan's reply to me? This is the first time my labs came back with this many abnormal findings. I will be happy to have a hematologist on board though. I feel like my case has been in a gray zone - sick but not quite sick enough, if that makes sense.