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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Dec 16 1:26pm | Replies (400)Comment receiving replies
I have been diagnosed with PV for over a year now. Initially I did phlebotomies till my count was controlled and now I am on hydroxyurea daily. I now get Phlebotomies about every 4-5 months. I’m concerned being on this drug. I am not sure why I can’t just get the phlebotomies monthly. I have asked my dr but he says because of my age, which is 65, I need the drug also. I am a very active person, still run half marathons and work out 6 days a week. I also eat healthy and weigh 133 and am 5’7”. I find I have other odd things going on, sores in my mouth, bruising, fatigue, poor sleep. I’m not sure if these are medicine related or disease related. I’ve tried to lose a few a pounds and can’t. Any body else have some insight on this?
Replies to "I have been diagnosed with PV for over a year now. Initially I did phlebotomies till..."
I also have sores in my mouth. As for poor sleep, I am fortunate that I can legally purchase cannabis gummies here in NJ. Helps me sleep, plus it gets me happy. Lol
I was just diagnosed with PV in January. Same routine. Weekly phlebotomies and then bi weekly labs and put on hydroxyurea b/c my platelets jumped over 600 after 4-5 weeks. I was wondering the same thing about dropping the drug and doing monthly phlebotomy? I am 56 and plan on asking once I have a regular “schedule” for the phlebotomies. I have very sensitive gums, swollen like small sores and DID not have them until on the drug. I was told to wait and see if my body should adjust? Also after just a few weeks, I have small brown spots on my skin which is also related to this med. Dermatologist said they are not dangerous, just cosmetic.
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Hydroxyurea seems to impact people in different ways... I have been on it since April 2021 and am very active as well... I can't run anymore due to a bad knee but bike, swim(when it's warm enough), and walk and am at a good weight for me.. Initially, I noticed pain in my big toes on my feet... That has long since gone away.. I have a heightened sensitivity to cold weather; especially in my hands... Anything under 45 degrees requires gloves ... That still persists to this day.. I think that these symptoms are/were from the PV and not the HU.. I could easily lose weight if I wanted to, but I am doing very well at my current weight and cannot at this point in time definitively tie my taking of HU to any noticeable symptoms.. I guess I have been "lucky" so far in that regard... I don't like the idea of taking such a potent pill and have no idea if there could be changes in my ability to tolerate it in the future.. For now, it seems to be working for me.. I have monthly blood tests to make sure HCT, HGB, etc, are at acceptable levels... FYI I am 68 male, and currently taking 8500 mg HU per week.. Best to you...