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Polycythaemia Rubra Vera

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  • Red areas on the back of my hands

    I've had PV for about 3 years and I have been perscribed Hydrea tablets for over a year now. Recently I have developed red areas over most of the back of my hands and the skin is dry and not so supple. Has anyone else experienced this condition. Thanks David Crane

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  • Bone marrow biopsy

    i was dx with Pv about 4 1/2 yrs ago based on blood work and the jak2 mutation.  I never had a bone marrow biopsy but am starting to realize I need to have one. Wondering if those of you who have had them were you awake or sedated?   What was your experience like with or without sedation?  Thanks....

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  • Not dx yet, seeing hemo next Monday

    Hello! I'm female, 60yrs young. Over the last 7 years I've had health issue after health issue. Hole in heart (25mm) repaired Secondary adrenal sufficiency  Lupus (in remission) Asthma (related to heart)  And now this blood work over two years which has rise and falls and rises this...

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  • Hypertension & polycythmia vera

    hi I was dx with high blood pressure about 4 years ago.  That is how my Pv was found through routine blood tests.  I have never been able to get my bp under control for any length of time.  It fluctuates a lot.  Does anyone else have blood pressure issues along with Pv?

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  • Itching

    Does anyone else get he itching real bad in private area also in it's so inbarssing. I'm on hydrea in have been for a year.

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  • Looking for answers

    Hi! My name is Kim and I am a 36 yr old female. I have been followed for a decade for a lupus/sjogrens mix. I got labs done extensively my first 2 years then went off radar (remission) until age 30. I got labs but everything was ok until I flared in 2015. Since that time I have had elevated wbc ( exact...

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  • Polycythaemia and B12 Deficiency

    Is it even possible? I was diagnosed with secondary Polycythaemia late last year, sometimes need a letting every month, can sometimes go multiple months before needing one. I do not have the Jak gene, but the cause is unknown at this time. Went to one of my GP's yesterday for dizziness, tingling...

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  • high red and white blood count?

    I've been to see consultant with high red and white cells. Don't no exact readings but got lots of blood taken including a test fir the jak2 gene. The nurse had a problem getting my blood as it was thick. I don't go back to consultant until end of September so I'm a bit worried. Can anyone...

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  • Can you help me with these symptoms?

    I can't withstand heat, whenever i am hot i am sleepy and my body nurves are hot as fire. I am sleepy suddenly and my hands, feets, or my body kind of go numb. Everytime i have this, i also have bowl moment. I feel much better after toilet. My body is like crazy hot.  Sometimes my body is...

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  • Hydroxyurea side effects

    Hello all, I have not been very active on the forum for the last month, being on vacation, but back to work tomorrow. By the way, I found a travel health insurance that will cover me as long as I am stable for 7 days prior to departure.  That made my vacation. I found it on the internet by searching...

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  • Concerned about potential PV - Blood work results

    Hello, I'm a first time poster. I'm hoping that some of you will be kind enough to offer me some feedback on my blood work. My doctor showed no concern at all, but my blood work looks a little suspect to me. I made an appointment to see a Hematologist, but unfortunately I can't get in until...

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  • Diet and natural remedies

    Hi, I am a male of 56 years, recently diagnosed with Polycythemia Vera. Trying my best now to find a suitable diet, though my doctor tells me there is no connection between lifestyle (diet) and the outbreak/progression of the illness. I still think it is important what you eat and drink. My doctor strictly...

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  • 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...

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  • 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...

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  • JAK2 negative PCV, anyone?

    I was diagnosed with primary PCV about 9 years ago, but have tested negative for any JAK2 mutations. Non-smoker, etc, so definitely not Secondary PCV (my EPO levels are almost non-existent.) I'm getting my first bone marrow aspiration/biopsy tomorrow (a little nervous about that,) and am just wondering...

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  • CBC Panel

    I'm not sure what happen to the other post I made. I really hope this goes through and someone can help....here is my latest bloodwork I had done: WBC...17.66...(3.98-10.04)...H RBC....5.07.....(3.93-5.22).....In Range HGB...14.5......(11.2-15.7).....In Range HCT....46.1......(34.1-44.9).....H MCV...90.9......(79.4-94.8).....In...

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  • 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

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  • CBC Panel

    I hope that the picture will be able to be seen. I want to go over my blood work seeing that my hemotologist has cancelled 3 of my appointments because she said it wasn't time to see me yet. Instead she wants me to go get drained and I don't want to because I want answers. I was told that I...

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  • nervous potential PV

    I'm new here just signed up and am scared out of my mind mostly from what I've read about life span. I'm 22 years of age and have not been officially diagnosed but my GP mentioned it briefly here are my counts from my most recent test I'm a 22 Year old male. Rather slim and short stature...

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  • 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...

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  • Possible polycythemia.... worried

    Hi my name is Robert. During my visit to my psychiatrist my pdoc wanted to know my lithium level so they did a blood test as they usually do every six months. She was concerned with some of my readings and has referred me to my general practitioner. I am obviously concerned with some of my readings and...

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  • 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...

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  • 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,...

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  • Polycythemia Vera and Interefon patients?

    I saw a specialist at the MPN center of the Weill-Cornell medical center yesterday, and she is recommending Interferon. I would like some information from anyone with Polycythemia Vera who has been treated with Interferon, and your experinces with it, good or bad _ i believe she said it is a once-a-week...

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  • Pannej

    Hi I've just thankfully discovered this group. I've had PRV with Jak 2 for 6 years. I'm a 62 year old female and have been treated with Hydrox and clopidigrel from Day 1. No symptoms before diagnoses or from the drugs. I mostly forget I have this disease apart from my 4 hospital visits a...

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  • 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...

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  • Busulfan

    Has anyone out there been prescribed Busulfan and how did it affect you?  I have been having a few issues with Hydroxycarbamine and have been taken off them for the time being because of nausea and it is proposed to try Busulfan but upoin reading the side effects am a bit concerned

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  • 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...

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  • 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...

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