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Polycythaemia Rubra Vera

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  • Rara1969 1

    Please can I introduce myself?

    Hello. I have stumbled across this forum whilst researching my condition. Thank you all for your information, I have found it very useful and it's good to know I am not alone! I am 47, female and from the UK. I have PV and have tested positive for JAK2. My condition was diagnosed purely by accident and...

    6 replies 0 votes Last reply
  • Zapamania 4

    Pv odds

    ive come across an interesting article that I think some of you might be interested in.  There are approx. 7.35 billion people in the world.  Pv affects 2 people per 100,000.  Odds of getting Pv are 0.0019%.  Approx 147,000 people have Pv.  Wow!   Zap

    137 replies 0 votes Last reply
  • RMederos69 1

    Recently Diagnosed

    Hi everyone! I'm reaching out to see if anyone has had a similar situation. I was just diagnosed with P vera today but it was purely based off my symptoms. I've had a high platelet count for the past 3 years, but not high enough for a bone marrow biopsy (not over 750). First they diagnosed me with thrombocytosis...

    6 replies 0 votes Last reply
  • txmom4life 2

    Looking for info

    My doctor just referred me to an oncologist for "acquired polycythemia" Naturally I've been trying to read up on it bevofore my appointment in 2 weeks. I can't believe that I would have such a rare disease. Other than increasing fatigue the last 12-18 months I am mostly in good health I'm a little...

    27 replies 0 votes Last reply
  • Zapamania 4

    Medical alert jewelry

    it has come to my attention because of the rareness of our disease, all MPNs, that we should consider wearing a medical bracelet or necklace tag stating  our disease, meds were on and our risk of stroke & heart attack.  The medical community is very clueless of our disease, and should we get into trouble,...

    23 replies 1 vote Last reply
  • bill71415 2

    PV Meds question

    Hello, 62 y/o US male diagnosed about 5 1/2 years ago with PV and Jak-2. Been managing it with phlebotomies and baby aspirin but had bad foot pain for the past few months. Doctor prescribed 500 mg of hydroxyurea and I'm wondering what positive/negative experience folks have had with it. Reading the warnings...

    22 replies 0 votes Last reply
  • anne1609 2
  • vanessa31033 2

    Confused, any advice please

    Hi, found this website a few weeks ago after coming away from my doctors being told i have a increased HB 162 and PCV 51 which apprently has been elevated since 2012 when i joined the surgery) after going back and having another set of bloods and JAK2 test my doctor said that she would refer me to a...

    16 replies 0 votes Last reply
  • kerry31068 1

    holiday insurance

    hi all just joined and looking for some advice. i was diagnosed with polycythemia a yr ago and currently on 1% oxygen 15hrs a day. im looking to go abroad later in the year for a holiday but insurance is out of my price range. an y tips ????? im in wales uk  

    8 replies 0 votes Last reply
  • susangail 1

    New Here

    I just received the final diagnosis of PV. I've  been havng phlebotomies every month for the last 4 months.  My RBC is back to normal, but I still have a low platelet count. Just wonderng if anyone else has the low plateles with PV?

    1 reply 0 votes Last reply
  • marie-jos6518 2

    How tired are you?

    Hi all, I was diagnosted 6 months ago, I am quite sure I live with pv for a lot longer. My first symptoms were itchy feet and fatigue. At first, the phlebotomies helped, my energy what back. But now, I feel worst, I have problems getting through the day I'm so tired. My iron level is almost zero and...

    8 replies 0 votes Last reply
  • lorinsj 1

    cramping after phlebotomy

    I am recently diagnosed with PVera and have had 5 phlebotomies. I am also on 100 of hydroxyurea. The only problem I seem to be experiencing is pain in my shins after the phlebotomy. It is faitlynsever for the whole day of the phlebotomy, and is betterby the next day. Anyone have an idea of why this is...

    3 replies 0 votes Last reply
  • marie-jos6518 2

    Phlebotomy high platelets

    Just saw my haematologist today. He's been wanting to put me on Jakafi, but my insurance turned it down. Right now, my platelet are over 1000 and my iron, around 6. My hematocrit is slowly climbing, now around 460. The problem is that I'm back to my tired state since my Dr doesn't like phlebotomies (I...

    16 replies 0 votes Last reply
  • mark89625 1

    Have PV, but no symptoms

    I have PV and have been diagnosed now for approximately 12 years, but I have never had any symptoms. Is this normal. I am 47. I am due to see my consultant today. I look at the symptoms that I could have for example: Itchy skin Headaches tiredness blurred vision The only one I do get sometimes is tiredness,...

    14 replies 0 votes Last reply
  • angela o..o 3

    In the papers today

    If anybody reads the Guardian, there is an article in it today saying that people with raised platelet numbers are more likely to develop cancer. Oddly, someone on this forum (maybe Peter) recently commented that they had been struck by how many of us had also had some form of cancer. Maybe it is the...

    28 replies 0 votes Last reply
  • lidia1972 3

    Hematologist at last

    Hello everyone! I finally went to the hematologist on Friday, my hemocrit is been around 46/47 hemoglobin 16/17 and RBC 5.6 so because I have been feeling sick with fatigue bone pains rash for a while I thought I had some kind of blood disease manly polychythemia. Well the hematologist said I am on the...

    7 replies 0 votes Last reply
  • laura32252 1

    Leg Cramps

    My husband was diagnosed with pv in March when he was sent to the Emergency room due to very high blood pressure.  they ran many tests and was told he had suffered 3 mini strokes due to the thickness of his blood (PV).  He goes to the Hemetologist and has regular Phlebotomies.  Also taking Hydroxia. ...

    6 replies 0 votes Last reply
  • harrishill1 4

    harrishill

    Hi all, I usually can't complin about my PV. However, The last few months, I've noticed that my calf muscles hurt when I walk with the dogs. I've been a walker all my life, and do not want to quit. I looked up side effects for Hydroxyurea, and one side effect is sore legs. I wonder if it is because I...

    9 replies 0 votes Last reply
  • Samve84 2

    Hydroxyurea or Inteferon

    Hi I'm 32 years old was diagnosed with PV in September was having regular Venesections but they are not controlling my hematocrit very well and my iron is very low. My haemotologist wants to start me on either hydroxyurea or interferon and has given me two weeks to decide. I don't know which one to...

    12 replies 0 votes Last reply
  • julia15874 3

    New specialist appointment

    Hi after eight months with my heamotologist and only having the jak2 and JAK exon 12 mutation tests and not really progressing any further with a diagnosis of either a primary course or a secondary reason for my polycythemia, I've now set up a new heamotologist appointment on the 18th of April, hopefully...

    28 replies 0 votes Last reply
  • UrosD 2

    Life with Polycythaemia

    Hello, I was diagnosed with PV a 15 days  ago. I am 39 years old.My highest values before phlebotomy ETC 7.7 (3.9-6.0) HGB 197 (120-180) HCT 0.58 (0.32-0.52) I did a lot of analysis and results are: EPO is low JAK2 mutacion ( in January negative - In Marth positive but i did analysis in diferent lab...

    11 replies 0 votes Last reply
  • justin23294 2

    Loss of food taste.

    Hi everyone.In one of my previews answers I explaned that i was diagnosed about a year ago with ET  .I'm on hydroxyurea 500mg 15 pills per week.My platlet count has been lower to 430. My Dr. is very pleased with the progress. But in the last few month I have lost the taste for food.I can't taste salt,...

    12 replies 0 votes Last reply
  • angela13591 1

    ?pvr

    hi i dont know if anyone can help, very confused with my results. Hb >165 pre venesction, Hct has been at its highest .50, epo low, still awaiting axon 12 mutation yet JAK2 negative. bone marrow showed low cellularity for my age yet no other changes. it all seems very contradicatary. could this still...

    2 replies 0 votes Last reply
  • marie-jos6518 2

    Interferon or Hydrea

    Hello pv community, Just back from my Dr appointement and he thinks that I should start medication very soon. Mainly because of my high platelets count. I'm from Canada and I don't know what the number means exactly but it's at 1100. At first, he wanted to put me on Hydrea right away, but, after I...

    13 replies 0 votes Last reply
  • julia15874 3

    Results at last!!

    Hi all as you know I went to see a new heamotologist yesterday, I took all my blood results, jak2, JAK exon 12 and epo results, he looked at them all in fine detail, asked if I smoked or ever smoked, I said no. He said it is without doubt in his mind I do not have polycythemia Vera, he could give me...

    4 replies 0 votes Last reply
  • Zapamania 4

    Easter

    Happy Easter to all my MPN friends.  Wishing you all peace and health.  Maybe by this time next year they'll be a new drug or cure for us.  Gotta keep hoping!  Zap

    2 replies 0 votes Last reply
  • lidia1972 3

    Low iron but high RBC ??

    I write a while back with possible pv diagnosis, my question is can you have low iron (36) and high hemoglobin hemocrit at the same time? I have symptoms of daily fatigue, so I asked for a iron test which doc said you are def not anemic with red blood cell value like that. I then went back and looked...

    3 replies 0 votes Last reply
  • mejeroca 2

    Recent CBC questions and concerns?

    I just received my most recent CBC and these were my results: WBC High 12.1 K/uL RBC High 5.13 K/uL Homoglobin High Normal 15.0 g/dL Hematocrit High Normal 45.6%  Platelet count High 403 (this is actually down from last time which was 489 while everything else was normal) MPV Low 9.3 fL Abso Mono High...

    4 replies 2 votes Last reply
  • natalie41165 2

    B12 - conflict

    Before my PCV was discovered, I had B12 issues and took B12 tablets, and it was sort of under control. Co-incidentally B12 and PCV symptoms and diseases are similar initally.. Headaches, dizziness, nausea, problems with internal organs malfactioning. My heamotologist (who I don't like, but the next...

    5 replies 0 votes Last reply
  • Zapamania 4

    Jakafi side effects

    ive been on Jakafi for almost 5 months.  I've just noticed that I have a blister on my palate of my mouth. I'm sure it's a side effect of Jakafi.  Does anyone else have blisters or sores in their mouth due to Jakafi.  What side effects beside mouth sores are you experiencing?  Linda

    1 reply 0 votes Last reply
  • Zapamania 4

    Bone marrow biopsy

    i had a bmb today with anesthesia and was wondering how long it takes for the site to heal?  How Long before you don't have to wear a bandage?  

    5 replies 0 votes Last reply
  • robtuck 2

    Dr's just told me I might have cancer and to wait 3 months???

    I had an appointment with my Dr 3 days ago, he told me I may have Polycythaemia, my Hemoglobin (is it?) on a recent blood result showed over 300 (30?)..  I'd never even heard of this before what he told me was totally unexpected, he basically said "You might have bone marrow cancer" after that I only...

    3 replies 0 votes Last reply
  • Zapamania 4

    Pv or et

    hi all I was dx with Pv about 4 1/2 y s ago.  Was going to a hematologist.  My platelets would go up 100 pts one month and down the next.  Once my platelets hit a million, I changed to an MPN specialist.  He first put me on Hydroxyurea which I couldn't toleratr.  Now I'm on Jakafi about 4 plus months....

    43 replies 0 votes Last reply
  • julia15874 3

    Phlebotomies/venesection

    Hi can you pay privately to have a venesection/phlebotomy in the U.K.? I'm still ongoing with the saga of a diagnosis and my blood dropped so on a wait and see scenario at the moment but it's on the rise again after my last blood test which was last week its now up at 16.5 and 0.48 which isn't as high...

    10 replies 0 votes Last reply
  • lidia1972 3

    It's me again!

    Still trying to be diagnosed as hematology visit is not imminent...grr I wrote a while back with possible pv diagnosis, my question is can you have low iron (36) and high hemoglobin hemocrit at the same time? I have symptoms of daily fatigue, so I asked for a iron test which doc said you are def not...

    0 replies 0 votes Posted
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