My sister has recently been diagnosed with this disease and because it seems to be so rare, its hard to find a lot of good information from individuals about the pros and cons of the medicine. She doesn't like taking medicine because of the side effects and is worried it will hurt more than help.
Patients who have been diagnosed with PV are advised to have their hematocrit levels checked every month. If the level is above 50, the patients should undergo phlebotomy (i.e. 350 cc of blood is removed from the body like in Blood donation). This continues till the monthly reading comes down to 40-43. In my case, within two/three months of a phlebotomy, the hematocrit level would go beyond 52, necessitating another phlebotomy. After about 2 years of quarterly or bimonthly phlebotomies, my hematologist started me off on Hydroxyurea (500) two months ago. Since then, my platelet count has dropped (but well within the norm) and my hematocrit level has stabilised under 49. The only side effect I have faced is flatulance. However, I would suggest that you consult a hemetologist before you start the medication.
I was diagnosed in June of 2006. I was told my by doctor that when the phlebotomies stopped working I would then be put on medicatio. Seven months ago I had to start Hydroxyurea as the phlebotomies had stopped working causing me severe fatique and anemia.
As for me it has done wonders; my red blood cell count is in control; the fatigue no longer controls my life as I am now able to take iron for the anemia.
I think your sister should give this medicine a chance. I was very reluctant at first but it did not last when I realized that I had a chance to live a active life without fatique and anemia in control of my body and mind.
Not all polycythemia patients start out with phlebotomy- my father's doctor started him on hydroxyurea (a chemo drug) after he was diagnosed. In the 7 years since his diagnosis he hasn't been phlebotomised. Hydroxyurea is a pretty serious medication, so close tabs are kept on cell counts and other labs, but it's effective.
- Hydroxyurea Information for Consumers
- Hydroxyurea Information for Healthcare Professionals (includes dosage details)
- Side Effects of Hydroxyurea (detailed)
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