I've had Polycythemia Vera about a year and half or so. Starting about 2 or 3 months ago I lost my appetite and have lost 20 lbs. Nothing appeals to me and I eat because I have to, and then I can only eat a small amount. Has anyone else with this disease experienced this? I saw my hemagologist today, and he took some blood draws, and palpated the liver, spleen area. But didn't say anything felt wrong. I don't mind the weight loss except I had to buy a few new clothes, but I really want to know the reason. If not PV, what then? I sure don't want to keep losing. Would like to hear from anyone with PV. Thanks, Marge

Maggie,
what is your cure for PV?
i have dome 10 phlebotomy up to now (in 6 months) and next week i should start with inferferon.
phlebotomy has lowered my red cells but increased my platlets (due to iron deficency)
on the last week i also got gout on my hands. has anyone experienced this?

i'm not loosing any weight.

Hi Chauffour - There is no cure from what I understand. Our goal is to keep the blood counts within range so the blood doesn't thicken. I, too, have had l0 phlebotomies and this is the first month (out of 3 months) that I don't have to have one. My platelets are O.K. My white blood cell count is l8 slightly high, but Doc not worried about that. My red blood cells are only a little high, and my hemoglobin is in normal range. I'll have another blood count done in Sept. The Doc is concerned about weight loss and took another blood test for something. I don't know the results of that. Right now my weight seems to be holding, but I still don't ever seem hungry and sometimes nauseated. I don't think I have ever had gout. Good luck to you. Hope all goes well with you. Maggie