Recently diagnosed with PV (JAK2+) however my blood counts are quite a bit different to others that I see posting here.
My RBC count has been normal for as long as I can see (in fact towards the low end of the normal range), however its my WBC count that is high. My platelets are high but just at the top of the normal range. My specialist has started me on Hydroxycarbamide and aspirin.
Anyone else having a diagnosis of PV but have normal RBC count?
I have ET so I’m unable to help. Rest assured someone will.
Sounds like a low-grade form of PV with leukocytosis and maybe borderline thrombocytosis. Perhaps not typical, but all of our MPNs can present with a unique profile. I have no idea why your doc would start you on HU with this profile unless you have had other symptoms like thrombosis or significant splenomegaly. Age can be a factor as well as the rest of your medical profile. Suggest you get a second opinion. HU can have significant adverse effects. While many can tolerate it, not all can. Here is a list of patient-recommended MPN expert docs mpnforum.com/list-hem./ . Your presentation does sound a bit unique - be sure you consult with a doc who can individualize your treatment plan.
Thanks for the reply. I do have an enlarged spleen although how enlarged is not yet known, waiting for the ultrasound appointment. I currently have no symptoms but I'm suspecting that after a while the HU will cause my RBC count to drop to below normal and then that will cause issues.
I have my next appointment in a couple of weeks and will query this.
Minor splenomegaly is not a big deal It will change size up and down over time. The ultrasound will give specifics. You should be getting labs at least every other week on HU, particularly when just starting. Very important to get the balance right.
Only started on HU at the weekend and will be getting bloods done next week.
Sounds like a plan. Do be sure to get a full understanding of HU - what it does, how it does it, and what the adverse effects are.
You did not mention your age, but for men and women of child bearing age it is critical that you do not plan to have (or risk having) a child while on it. HU is highly teratogenic (causes birth defects). It is so teratogenic that women of childbearing years not on HU are not supposed to even touch the bottle without gloves. Some of the patient education will caution that sexually active couples should use condoms as HU passes into semen and vaginal secretions (to protect the partner from exposure). the docs don't always tell you this one.
Hope the HU works for you without any significant problems. Some people tolerate it just fine and never have any problems with it. Will hope that is what you experience.
66, no plans for any more kids!
64. Me neither. Being a grandparent is great!!
My RBC was 5.8 when diagnosed, but it was mainly the platelets which were the issue (1200). I am JAK2 positive. I was 65 at diagnosis and after 2 venesections was switched to hydroxy.
Running with PV?
Proving Polycythaemia Vera (PV) with/without WHO2016 criteria
Rate of Decrease in RBC Count
Normal playlet count
Dx of ET vs PV
