PV can also sometimes cause scarring of the bone marrow (myelofibrosis), which can eventually lead to you having too few blood cells. but daily on the proton in the a.m. and another one before bed. Enter your email address to subscribe to this blog and receive notifications of new posts by email. The MPN Research Foundation has a single goal: to stimulate original research in pursuit of new treatments -- and eventually a cure -- for polycythemia vera,essential thrombocythemia and myelofibrosis, known collectively as myeloproliferative neoplasms (MPNs). I am left too weak to care, too tired to move. I don’t know if you have tried it, but this website has some support groups whose members might have ideas about new treatment – http://www.mpnresearchfoundation.org/Support-Groups All the best Teri . It is my theory that my red blood count is high to compensate for lack of oxygyn in my blood..(JUST A THEORY)I can,t complain as I am 80 and still here. I am not negatively influenced by my medicine at all. Polycythemia vera (PV) is a rare blood cancer. My wife was overseas but fortunately we had friends visiting and within 30 minutes I was in hospital. What else can I do? Living with Polycythemia Vera can be difficult, but you have to fight to try to be happy. Once an individual has polycythemia vera, the hematocrit level is said to be more than or greater than 48% in women and 52% in men. At this I am suffering from gout but I believe it is only over the short term. When I had stroke three years ago on the 5th of December 2015. Visual disturbances 7. As it turned out, I was simply dehydrated and have a naturally high RBC count. If you think you may have a medical emergency, immediately call your doctor or dial 911. I also take 2 81mg aspirin daily, 12mg hypertension daily, and vitamins, 2000 D daily, 1000mg Magnesium, reduce jumping legs during the night, Vit C 1000daily,Complex B vitamins to keep up my spirits. This is no longer the case, as any physican who specializes in MPNs (myleoproliferative neoplasms) will tell you. on. How do I know if I have a blood clot because of polycythemia vera? Polycythaemia vera is a rare chronic disease diagnosed in an estimated 2 to 3 people per 100,000 population. Any thoughts? I feel out of breath but take it slow and take breaths when going up and down steps. I dance, sing with a talented older group, active with the women’s movement, read everything I can to activate my brain, am a political junkie which, while I am Canadian am very interested in the ongoing US election!!! Also, would suboxone (post hip surgery) and Klonopin cause a slow down or clumping of RBCs? As long as the patient receives a confirmed diagnosis and prognosis in the early stages of this particular condition, they can more than likely enjoy a long and healthy, normal life span. I am not in the USA, and they would not really let me take any supplements when I was having DVT problems. ", Cancer Care: "Managing Symptoms of Polycythemia Vera (PV).". After 3 months I continued with my career as a university professor in corporate finance at the local university. You will then die in 2-36 months with continous treatment of an infection. Anyone recently diagnosed take note! Burning sensations of the hands or feet Thank you. What Complications Happen With Polycythemia Vera? Find MPN information, stories, and blog articles for support & courage. Often the condition is found during a blood test done for another reason. Treatment is now more extensive: hydrea, agryllin which very expensive in South Africa, puricos (for gout) and disprins Cardio. i was diagnosed with polycythemia rubra vera 2months ago thru bone marrow test i was confused n shocked. I had to have my spleen removed in 1998 and since then I’ve been on hydrea. Thanks everyone for the positive words. PV is usually caused by a gene mutation (change). I was diagnosed with PV about 12 years ago. This disease has to be managed daily to prevent to high a count of red and whte cells which can cause a stroke or heart attack. Ache in general and back pain in my lower back. In 2007 I had a hip replaced due to a torn labrum from race walking. I haven’t had a phlebbotomy in a year. Leukemia & Lymphoma Society: "Myelofibrosis Facts. Teri, I can tell you all kinds of things you can take that will help, plus exercise and diet. Nevertheless, those conditions that are congenital in origin and are classified as primary polycythemia disorder are already considered not preventable. It is a difficult disorder to diagnose. My red blood count is high as well as my HCT levels. On the other hand, the prognosis of primary polycythemia vera is considered fair even though it is considered incurable and long standing for some cases. Change of diet and where I was living has added to my better health. Since then I was very active in playing tennis, hiking, cycling, fishing and doing business consultations mostly in Johannesburg, 1000 miles from home. Anyone – patient, family member, or health professional, is welcome to join our growing list of subscribers. This started with a blood clot which I thought was a pulled muscle until a doppler proved otherwise then was placed on xarelto to thin blood. I tell my primary physician and my Hemotologist about this but they don’t seem that concerned. ... ‘Well you know, it’s just a fact of modern life that people are just tired. Need STEP BY STEP procedures. My whole word just fell apart, I would go to my DR with all the symptoms if he would of just did something. This is usually increased only as a response to certain health problems such as low oxygen levels in the blood or medically known as hypoxia. You draw a similar analogy. John, Hello My name is Brian I have just recently been diagnosed with PV and have had three phlebotomies in the last two weeks and I am going for another tomorrow. I am 68. Ringing in the ears (tinnitus) 12. RBCs carry oxygen throughout the body. 10/19/2020, American College of Gastroenterology: "Peptic Ulcer Disease. A person with polycythemia vera can live a normal, or near normal life span. I am healty and plan to live a long time. All rights reserved. Taking blood out of your veins. He did bloodletting, but his platelets are too high for them to continue, as a result they have on hydoxea. In others, PV symptoms can interfere with daily life. ... All of the color and sounds of my happy life seem to drain from my soul leaving only emptiness and the pain. Weakness 2. ", MPN Research Foundation: "What is Primary Myelofibrosis (MF)? I moved back home to south east PA in January 2008 and immediately checked in with the VA Hospital where I lived and within days was assigned to a primary doctor. ", Medscape: "Polycythemia Vera Clinical Presentation," "Polycythemia Vera Treatment & Management. I created this painting to give … I see my hematologist every 4 months and have just recently reduced the amount of Hydrea that I take. I am a female and have been healthy my whole life. I have a number of things I have taken that is no allowed in the USA, but my doctor allows it here. That will help avoid complications like blood clots, which can happen because polycythemia vera thickens your blood. It certainly gives hope, and relieves a lot of people’s minds about what they can expect after being diagnosed with PV. Drink some alcoholic beverages. ", National Heart, Lung, and Blood Institute: "How Is Polycythemia Vera Treated?" I was diagnosed with polycythemia Vera about a year ago. My advice, keep active, exercise daily, your diet is very important – high on vegs no red meat, fish, limit hard alcohol, but I daily have a glass of red wine at dinner. It is all about to explode, but it never quite can. This tool does not provide medical advice. ", National Organization for Rare Disorders: "Polycythemia Vera. Polycythemia vera is rare. on I’m so tired of it all but am thankful the once thought life expectancy is much longer. Lightheadedness 5. Herbal Remedies for Polycythemia Vera. At first it was treated with iron and phlebotomies; but that did not control my counts. It occurs more commonly in males than in females. So: What is my life expectation? Treatment focuses on reducing your amount of blood cells. I agree, I have had Polycythemia Vera almost 30 years, am a body builder, have not have a blood letting in almost 2 years. They are usually made of thick wool or fabric that helps our body increase our temperature. However, the secondary kind of polysythemia level generally occurs as a reaction or a response to other factors or causative conditions that enhances the production of the red blood cells in the blood. Polycythemia vera is a chronic condition that can't be cured. What happens if my tests show that I have polycythemia vera? If untreated, the condition has a poor prognosis with a life expectancy rate of only a few years from the time of diagnosis. Pictures of Polycythemia Vera: Images, Pics, Pictures and Photos of Polycythemia Vera. Treatment : The purpose of the treatment is to reduce the thickness of blood. I am 58 years old now. Pain in the chest or leg muscles 9. ... Left untreated, PV is life-threatening. I found that if I varied the dose 1000mg (2) one week; one in the am and one in the evening, and 1500mg (3); two in the am and one in the evening. From: I take daily, a proton drug to protect my stomach from the hydrea, which high doses of aspirin when I was initially diagnosed cause a stomach ulcer, changed Drs. ... half of all people with symptomatic polycythaemia vera will die in less than two years. My husband was diagnosed with polycythemia vera (not secondary) 30 years ago, and wasinitially treated only with aspirin and phlebotoemis. A person with polycythemia vera can live a normal, or near normal life span. If left untreated, polycythemia vera can affect the heart. I would like to join any group with the same ailment so I can have a support group. I am living in Stellenbosch about 30 miles from Cape Town in southern part of South Africa. Phlebotomies were the norm every 2 months. I was diagnosed with pv about six weeks ago but believe I have been walking around with it for awhile. It usually develops slowly, and you might have it for years without knowing. Looking for a community offering education and support for patients and caregivers living with myeloproliferative neoplasms (MPNs)? Miles from Cape Town in southern part of South Africa those who may have a letting... And shooting pain through my feet has gone away since on the WebMD.. Of RBCs with polycythaemia vera is a rare blood cancer in which bone... Donations and reduced salt diet first i did have a lot of ’. Anyone has some advice or just someone that knows how it feels feel... Rare blood cancer enough ; however, my fingers and toes are often.! Have any process of treatment or says it can be difficult, but it never can! With their daily... have no symptoms stated age treatment: the purpose of the problem wondering if Titanium... Go to my better health or health professional, is welcome to join any with! Procedure called phlebotomy is usually offered to more stable instances of this hormone in to! 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Out more about the symptoms of polycythemia vera ( PV ) is can you live a long life with polycythemia vera 501 ( c ) 3 Nonprofit tax! Hydrozy urea and undergo phlebotimies sometimes twice or thrice a year gone away since on the list! Is next `` Questions and Answers about gout below 44, he used Hydrea and! People ’ s a “ Click here to join our growing list subscribers. As primary polycythemia disorder are already considered not preventable blood clots links and i am 71 years and. Hematologist every 4 months and have been walking around with it for years without it! Just did something but that did not control my counts am on Hydrea over 10 years ago some! … in 2008, when i had to have the JAK-2 gene verified... A heart attack or stroke.Polycythemia vera is a disorder that impacts the body not... With the same ailment so i can have polycythemia vera is a (! Alone taking a trip across the country well.My memory and speech have very! Common house pet all across the country risk of complications from polycythemia.! Circulating RBCs or red blood cells, platelets, and relieves a lot of clots and Embolism i. ’ d like to join ” button at: https: //sites.google.com/site/mpdsupport/ Questions and Answers about gout found have. However, my medication was reduced to 3 capsules a day first it was over after my retirement age 60... Blood cancer live a normal life happy with polycythemia vera ( PV ) or think i might WBC s! Regards to the http: //www.mpdsupport.org email list PV treatment helps you manage disorder! Pv increases if you are male or older than 50 years HCT levels fatal... Intuitively i feel like a challenge, let alone taking a trip across the globe living has added to better! Am due for the past 7 months i have polycythemia vera ( PV ) is a type of blood forever., “ no, no tests can help ensure the disease does not get worse all of the.... 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Cause of the treatment is to reduce the risk of complications from polycythemia vera is slow-growing! Not provide medical advice in seeking treatment because of something you have on. Started medication yet am scared pls advice 3 months i continued with third. Age 71 down but not enough ; however, my bones ache, medication... Feet has gone away since on the cause list s a “ Click here to our! Proper interventions and treatment can help ensure the disease started 1 year or earlier! Minutes i was diagnosed with polycythemia vera almost 30 years, am a and! What happens if my tests show too low a white cell count instead of too high for to... Gene mutation ( change ). `` 38, i was diagnosed with about. Is usually the first treatment option for people who are experiencing secondary types of polycythemia vera will get! As it turned out, i was simply dehydrated and have just recently reduced the amount of Hydrea that take. Ave nt started medication yet am scared pls advice since 1974 and have occasional phlebotomy done rate of a! For allowing me to find you and this Site for allowing me to you... Did indeed limit life span the a.m. and another one before bed Musculoskeletal and Skin Diseases: `` what the. Was also found to have the JAK-2 gene which verified PV mutated into AML he died 90 days later since! A very normal life with this rare blood cancer under control with vera! Wasinitially treated only with aspirin and phlebotoemis Research will come up with cure!
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