Polycythemia Support Group

Polycythemia is a condition in which there is a net increase in the total circulating erythrocyte (red blood cell) mass of the body. There are several types of polycythemia. Primary polycythemia, often called polycythemia vera (PCV), polycythemia rubra vera (PRV), erythremia, or just PV, occurs when excess erythrocytes are produced as a result of a proliferative abnormality of the bone marrow.

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  • deleted_user

    My 3 year old was just diagnosed

    I'm looking to get some help or info about this. My 3 year old was just diagnosed with this 2 weeks ago and I live in a small town and they have no idea how to treat it and say they really have no idea about what to do with a child so young having it. Can someone help me out? I'm going crazy here my son is way too young for this and not knowing or finding any info about children having this is...
  • deleted_user

    just diagnosed with polycythemia

    hi all i am new to this group i was told yesterday by my haematologist that i have the condition polycytemia but what i have been reading has scared me to death. i go back in 6 weeks and se has sent 1 blood sample away to be gene tested ? i have had a blood clot but this 19 years ago.ihave raised red, white, and platelets can any one please explain to me what this is and what is the prognosis if...
  • Gizmo59

    Regarding polycythemia

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     I am a 57 year old male and was just recently diagnosed with polycythemia and was just wondering about my side effects I get slight itching some headaches and nausea and joint pain in my right elbow and knee and have been in for two blood draws my numbers have only dropped about two points
  • birkita

    Have polycythemia with no genetic proof

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    My Hematologist has diagnosed me with polycythemia but the genetic test and bone marrow biopsy has shown nothing unusual. My Hematocrit is constantly in the high range and I have leg and mouth ulcers as well as plenty of brown marks appearing on my legs. My blood is often so thick it takes multiple heparin shots to do phlebs. Now my insurance is messing around with needing preapprovals for phlebs...
  • Sesser

    Questions

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    Hello, I have had mild elevated RBC for the past couple of years (hempblobin and crit normal just RBC). I was always told it was nothing. Last month is was 20 pts elevated however and my b 12 was 30 pts elevated. Ive had issues of stabbing, stinging joint pains for years that come in flares, as well as stiff joints in my toes and fingers. Also I get waves of bad fatigue. We had assumed this was...
  • david811

    Mutations aside from JAK2

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    After my wife was diagnosed with PV she took part in a clinical trail and discovered that the she had 3 additional mutations beside the JAK2. They are TET2, bcor and cebpa.Does anyone else know of these or may even have them. If so, what course of action have your doctors prescribed?
  • deleted_user

    Questions about dx

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    Hi, I'm a 40 year old female with Lupus and aps. Recently my rheumatologist has been talking to be about polycythemia. My RBC, HCT, and HGB are all high. This is not new for me they have been high for at least 20 years. Lasted labs showsRBC 5.45HCT 48.4 been as high as 50.1HGB 15.9 been as high as 16.4 These are all pretty much what they run on a regular basis. Back in 1997 I had red blood cell...
  • deleted_user

    PV & hh

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    I have PV and Hemochromatosis it's so difficult to get them both regulated. Does anyone else suffer with these?
  • deleted_user

    Newly diagnosed & new here

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    Hi allI was first diagnosed with Polycythemia a month a go. I haven't been feeling great, health wise for many years: I lost the use of my right leg in Sept 2012 (Dr's at first thought it was MS) last year they confirmed that I had had a small stroke. Between 2012 and today I have experienced many strange symptoms that would come and go. Dizziness, numbness and pins and needles,headaches,...
  • deleted_user

    Where a person lives contribute to polycythemia?

    I am exploring whether where a person lives contributes to this disease. I live in a high altitude city (over 5000 ft elavation) I have read lack of oxygen is a factor with this disease. Would appreciate knowing where people with this disease live. Mainly what the altitude is where you live. And it would be interesting to know if this disease is more prevalent in certain areas too. I tried to...
  • Greetings, I am very new to this group, in fact joined today. I have had PV for 25 years, and in the USA, I had many clots, and embolisms when I was younger, 39 - 45. Later I moved to Bangkok, Thailand, I did not have a clot in 15 years! My first blood draining here cost me $7. But that is not what I want to tell you. About 5 months ago, my brain was getting dizzy, I could not get my leg up over...
  • deleted_user

    Spleen Enlargement

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    Has anyone experience enlargement of the spleen or pain and discomfort in the spleen area?
  • Twoofus

    PRV treatments

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    My wife who has PRV is being treated with Hydrea. It is succesful as far as controlling platelets etc but there seems a never ending stream of side effects(?). Rashes, peripheral oedema, mouth ulcers. These, more than the disease seem to make her continually uncomfortable. Is there anyone who has PRV succesfully controlled with phlebotomy?. Specialist doesnt seem to entertain any other treatment...
  • Twoofus

    Symptoms PRV or Drugs?

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    My wife has had PRV for 4 years odd. Blood counts are fairly stable on Hydroxyurea but she is constantly getting an oedema like swelling in her legs ( inner thigh, calves,ankles) that reach a peak and then fade away. Whole process takes about 2 weeks and is very predictable which in a peculiar sense is reassuring. Other symptoms would be tiredness and itchy skin. Medico,s either dont know or are...
  • deleted_user

    Mom has PV

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    Hi! My Mom has had PV for about 9 years now. Just recently she has a enlarged spleen and liver. I am not sure what that means because she won't give me a lot of details because she doesn't want me to worry.. I hope it is not too serious.