Discussions By Condition: Medical Errors

Polycythemia Vera?

Posted In: Medical Errors 0 Replies
  • Posted By: Professorredbag
  • May 24, 2011
  • 05:11 PM

Hello Fellow Members,

I was diagnosed in January with:

1. Myeloproliferative neoplasm - polycythaemia vera (PV)
2. Idiopathic thrombocytopenia - low platelet count (90-110) (historically normal for me)
3. Hypertension (1 year)
4. Hyperuricaemia (sporadic)

and with regular weekly venesections (500ml) put on a regimen of Hydroxyurea - 1000 mgs/day for approx 3 weeks and reduced to 500 mgs/day for a week, when, in February, I suffered Pyrexia of Unknown Origin (PUO) and was in hospital for 10 days. During this time I was taken off all medication except for high blood pressure (Amplodipine) and a sleeping tab (Stilnox).

When I recovered from the high fever, my RBC, Hemoglobin and HTC counts were normal (4.62, 13.8% and 44 respectively) but increased again within 2 weeks. I had regular weekly venesections until this week. Now the counts are back to normal. I increased my water intake considerably two weeks ago and there was little change in my blood counts from then until now.

After conducting some independent research I recently asked my Dr. to confirm the diagnosis by having the JAK2 Mutation and Erythropoietin tests done (to confirm PV and rule out secondary polycythaemia). Both tests returned this week with normal (negative) results which surprised my Dr. who was convinced the JAK2 test would be positive for the mutation.

Spurious polycythaemia is a possibility. (self-diagnosis)

My concern is in continuing to take the Hydroxyurea as my Dr. has recommended.

I'm looking for some suggestions as to the direction I should take from this point onward.

Thanks for anyone sharing their experiences and advice.


Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.