Expert Insights

What are some of the challenges involved in making a PV diagnosis?

Read transcript Close transcript

I think you have to have a high index of suspicion. This can be very challenging at times to make the correct diagnosis.

Not too long ago I had a patient that had anemia, high white count, high platelet count and when they did the bone marrow biopsy, the diagnosis was that of primary myelofibrosis but prefibrotic because she didn't have a lot of fibrosis on the bone marrow. Well, somehow the fact that she had no iron stores on the bone marrow biopsy was entirely overlooked

So after she was started on iron supplementation, she comes back two months later, and now her hemoglobin is up to 18 grams. Well, I can tell you that would be a very unusual myelofibrosis patient with hematocrit-hemoglobin that high and that when you look back, this patient had PV all along. She was not with high hematocrit from the get-go because she was iron deficient.

I have others who, for example, presented with clots and testing wasn't performed and only several years afterwards—after they manifested with disease, that's when someone thought to check.

Image of Jamile M Shammo, MD, FASCP, FACP
Jamile M Shammo, MD, FASCP, FACP Associate Professor Rush University Medical Center | Chicago, IL
As principal investigator of clinical trials in her area of expertise, Dr Shammo is heavily involved in education, research, and administrative activities in the Division of Hematology/Oncology. She is recognized nationally for her expertise in bone marrow failure syndromes/paroxysmal nocturnal hemoglobinuria (PNH) and was chosen to serve as a national coordinator for the US PNH registry.