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I was diagnosed with Polycythemia Rubra Vera at the age of 41. I am now 57. I have been on Hydrea for 16 years as of tomorrow. All my counts were way out of whack originally and my doctor (GP) had diagnosed me with stress instead of PCRV for a 2 year period. He had not done a single blood test and my hemo doc says I may have had it for the 2 years prior to diagnosis. My platelet count when discovered was 1377. I can't even remember what everything else was. I have Pleb's ever 6-8 weeks and my platelet counts have never been below 700 in the 16 years I have had this disorder. I do not have the JAK2 mutation as I was tested and it came back negative. I see someone had posted that it could be due to giving blood. Never done that in my life time. I can say that after 16 years I do not feel the same as I did before diagnosis. I am feeling alot worse. I have bone pain when my marrow becomes over saturated and my joints swell before pleb's. My skin is a darker color when I have too much blood and I know before the test results even come back that its pleb time again. Its fairly routine. Normally 500mg of Hydrea each and every day for life, but after a pleb, 2 weeks of 1000mg just to keep the hounds a bay a little longer. And yes, there are side effects. I dutifully take my 2 81mg aspirins a day and to combat the headaches and sometimes migraines caused by the disorder, my doctor put me on Topiramate (25mg 2x a day) an anti-seizure med that also works to prevent migraines. It has worked extremely well. Not had a migraine in 10 years. However, bone pain from this disorder is another thing. I do get splintering bone pain and for that I take Percocet. Not every day, only when needed. And my hemo doc says as my PCRV progresses, that will probably get worse. I was told this was an old man's disease but I see by this thread there are alot of younger people getting it. I was also told its uncommon for a woman to get it. When first diagnosed, my first hemo doc told me to go home, make out my will and wait. That wasn't good enough. Got into another one and was given 5-7 years. I am still here 16 years later and am hoping that I will be here a lot longer than 16 more. Get up every day and breathe in and out.

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Same exact story on my side and confirm that a low iron diet is a key to deal with this cancer
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Have had PRV now for two years. HAVE MONTHLY venesections as my only treatmemt. Have been told to eat plenty of red meat and high iron yielding foods to cope with my low iron counts.?
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In reply to your systemic body itching. I have had PV for 3 years and I take Reishi Mushroom capsules, 600 mg by Solaray. I take 2 capsules in the morning and 2 capsules in the evening. It stops the itching. You can buy it on eBay.
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Great, thanks for the encouraging post.
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Is it cannabis he uses? I heard it helps.
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Where is your face book page?
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I take hydrea in my head hurts in feels fool allso. In I'm having bladder problems.
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Would u pls Tel me where r u doing d treatment.my friend affected with ds dieses.
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Hellp my name is Rob. They took bone marrow and it came back negative for luckemia, but because of my high red blood cell count they say they are suspicious for polycythemia Verra. I just took a blood test on Thursday fo the JAK 2 gene and if I have that the doctor says it will be confirmed I have polycythemia. I was just googleing and came across this site. I'm 43 and nervous as ever.

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Do you still have the fb page?
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Rob, a bone marrow biopsy should detect PV.
Did you find out the results of your Jak2?
Jak 2 can also be detected in bone marrow
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I am 42 years old, female, never smoked, do not take any medications and live a healthy lifestyle. I have experienced symptoms of PV since I was a teenager (mainly tiredness and itchies). I've never had a problem with anemia--if anything my iron count has always been a bit too high. I experience headaches from time to time and blurred vision, I'm always tired after I first wake up but thankfully my bouts with the itchies don't happen very often.

My GP recently diagnosed me with PV and said she wants to see me back in 3 months before referring me to a hematologist. I am concerned that she wants to make me wait another 3 months. She also didn't provide me with any information about PV before I left her office, so I've been conducting my own research online. I've been frightened by what I've been learning about PV, so let me just say that after stumbling upon this site, I've been comforted by everyone's comments. I feel reassured and encouraged after reading how each individual has been dealing with and managing their PV. Thank you for sharing your stories and tips.

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Need to know FB because my wife have PV thanks
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congrats Tomcat wish I could say the same but I am a amputee no running for me but keep up the good work can only help you get stronger
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