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Old 10-04-2003, 12:43 PM   #1
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Post Polycythemia Rubra Vera

Hi there, I have recently been diagnosed with PRV. Dr tells me that is take 5-8 years to show in the blood. It is a overproduction of blood cells from the bone marrow. I went for a blood test and this is how they found it. I was so suprised because I never went to the Dr because I never felt good., I went for a referal to a gynacologist about family planning and I just happened to tell her that every once and a while I get a little light headed and it only last 1-2 seconds, just like bending over to do up my runners, so she sent me for a blood test and this is what I found out. I have since been for 4 phlebotomies, 1 every 2 weeks of 500 ml and had another count done yesterday and everything has come down, except my platlets are very high 685 and the norm is 450. Dr says once they reach 700 I will have to go on medication for the rest of my life. I am only 36 and just got married 2002 and would like to have a child, but with all this happening we are totally confused. I am so scared. Dr tells me that this could turn into Leukemia. Just wondering if there is anyone else out there that has this disorder and can help me out through this time. Dr says that it ususally takes people 2 years to accept the disorder. I am a basket case now, I can't even think about 2 years down the road. Anyone have any input it would be greatly appreciated.

P.S. Till this day, I still have no symptoms of Polycythemia, but the Dr says I have it. And she also says it is Primary and no chance it can be socondary

[This message has been edited by Putzpatch (edited 10-04-2003).]

[This message has been edited by Putzpatch (edited 10-04-2003).]

[This message has been edited by Putzpatch (edited 10-04-2003).]

 
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Old 10-04-2003, 01:00 PM   #2
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Hi, you replied to my question....I was just wondering do you have polycythemia vera???Is that the same thing as prv? Everything i have looked up is so so confusing because one site will say it does not tend to run in families, but then another site will say it is hereditary but rare.. I wonder if they even know....Anyway, I can understand a little about how you must feel scared and freaking out because i find the information is sketchy.....Please let me know how you heard it was not hereditary like documents, websites, your doctor, or whatever... i would truly be greatful......I would be so confused also because everyone gets dizzy spells ya know....If you have polycythemia vera I know some stuff about it,,,, as much as i can, and can give you some info... my mom expierenced it ,,,,good luck concieving and best wishes....anna
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Old 10-04-2003, 01:11 PM   #3
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Hi Anna. I just say my Dr yesterday and my mom asked her if it was hereditery and she said defenitely not. She said we are born with lost of malfunctions and it just takes one thing to trigger them. My husband and I want to have a child because I am not getting any younger 36, and that is why we asked that question about hereditery.
Hope this helped
Cheryl

 
Old 10-04-2003, 01:13 PM   #4
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Sorry yes I have Polycythemia Rubra Vera, but I abreviated it because it is such a long word to type PRV is much easier. Been diagnosed 5 months ago. Dr says it takes about 2 years for people to accept that they have this blood disorder. Great, I hope it doesn't take me 2 years because I am a basket case now

 
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Old 10-04-2003, 03:37 PM   #5
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Well I am 31 getting ready to turn 32, and my mom passed away 2001..... BUT I swear I wonder if it had to do with the medication she was on because hydrea sometimes may make polycythemia turn into acute mylogentic leukimea I have read.... she had polycythemia vera i'd say for about 15 years or maybe even a little longer......She was 59 years old when she passed....I wondered if prv is the same thing as pv,,,,thats what i wondered....It is nerve wracking because everything i look up about it says things a little different.....I know you are stressed right now but try not to be i know easier said than done....I would deffinately try fruits & vegetables plus coral calcium you never know it may make all the difference in the world ...It almost seems like you dont have what they say you have, because of your age and the fact that you dont seem to have many symptoms.....anyway are they sure? have you had a second opnion????? Nice to hear back from you and i hope your doctor is right about it not being hereditary because i have 2 girls of my own....Good luck with getting pregnant,,I hope to hear from you again .....anna
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Old 10-04-2003, 05:13 PM   #6
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Hi Anna, Sorry about your mom. That is the thing, the Dr says I have it and I asked her if it could be anything else causing my blood count to be high and she said no. I have not had a second opinion yet, but I am thinking about it. I am in Canada and I called another Hematologist/Oncologist, and the earliest I can get in is July 2004. I wish we had likes the US, where you pay for medical attentioin. I was actually think of going to the Mayo Clinic and letting them check me out because I have no symptoms. Hydrea is what the Dr wants to put me on in January when I go back if my platlets are still high, and I also read that about leukemia and the Dr even told me that it can change in leukemia. Did they diagnose your mom the acute luekemia after the polycythemia. I also am a smoker which probably doesn't make it any better. I am going to quit very soon. That will just be one more hurdle to get over and I am sure it will not be easy. They say polycythemia has a live expectancy of 11 to 15 years after being diagnosed. But I would like to see 65 at least to get back some $ from the government that I have been paying into........lol. Hope she is right
Talk to ya soon
Cheryl

 
Old 10-04-2003, 06:09 PM   #7
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It's Anna again.... I hear ya about the smokin, I also smoke an so did my mom,,,,How can you quit at a time like this...We are so close in age,,,I can understand you wanting to live until your in your 60's or 70's hell 110 would be great to me....I read that you said you are the only child well so am i....I dont quite know if the hydrea caused her to get aml but i think i read somewhere that it could,,,I think that some how some way there has to be a way for everyone to cure themselves but knowbody has found out how....I know that I worry daily about getting polycythemia vera and when you told me your doctor said that it is not hereditary i felt a lot better but i really still worry.....I will some how send you some articles i have found on it if you want...I really think that they need to do so much more research on pilycythemia vera because it is rare (so they say )i dont think they have done enough research on it......glad to hear from you again it really helps to talk to someone,,,,sometimes i get so nervous about having it i cant eat or anything i truly think sometimes i have it and i am so so scared to go get my blood tested ,,,how crazy does that sound...The last time i got my blood checked my hematocrit was 42 he said i got dizzy because i am not eating enough hum makes me wonder .....I really wonder that you may have been diagnosed wrong really i am glad you are getting a second opnion,,,,but i cant believe until freakin July thats crazy......please keep in touch and let me know how things are ,,,talk soon anna
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Old 10-05-2003, 06:57 AM   #8
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Cheyrl,,,hi it's anna ....Well I have been expiencing aura migraines without the pain like everyday and i wonder ,,,i swear i think i might have something wrong.....anyway thats one of the symptoms of polycythemia vera visual disturbances ya know....Have you ever gotten these?????
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Old 10-05-2003, 11:08 AM   #9
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Hi Anna, Cheryl here. I have migranes probably 4 times a week. I have been feeling very off balance and like I want to throw up, so I went to a neurologist and he told me that benign tumors can cause Polycythemia so he is sending me for a cat scan on December 3 to see if I may have something growing upstairs. My visual side of it is weird also, like sometimes I have a hard time focusing and it is a blur. I went and had my 5 year eye test and my eyes are 20/20 which kinda was not the news I wanted. I wish she would of said that I need glasses, but no such luck. So have you had a complete blood count? Maybe it is easier to control if you catch it early. I was reading about some people that were diagnosed after the fact they were very itchy, which I am not and one girl passed out at work and that is how they founf it. I also read a girl's story about how she used to go every 2 months to have blood taken out and since she quit smoking she only goes once a year. And she tells people to defenitely quit smoking, Easier to say. They say when you smoke your blood gets very thick and the platlets grow 3x from smoking. But man. I am so stressed, I need something to fall back on, seeing as I don't drink. How long was your mom on Hydrea before they found out the had ACL. And what were her symptoms, if you can remember. I think for piece of mind for yourself you should go get a complete blood test done. They say if you keep thinking that you have some kind of disease, you can cause your body to give it to you from the stress. Well talk to ya soon
Cheryl

 
Old 10-05-2003, 03:19 PM   #10
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hi cheyrl it's anna well i know my mo was on hydrea for acouple years then she found out about the aml......Did you see weird things when you had the migraines????Did you have pain????/I am tripping out because now i have one everyday.....no pain just aura......it's almost like an obsession its all i think about im scared to death really....Anyway i will talk later i will try an not panic ....but i swear i dont know what else could be causing this,....talk soon......i hope you dont have anything wrong like a tumor or whatever they said you might have well i will try an not worry anna
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Old 10-06-2003, 04:37 PM   #11
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Hi anna, Cheryl here. When I get migraines, my head feels like it is going to fall off my shoulders. I get them so bad sometimes that I end up throwing up they hurt so much. No, my eyes do not go funny when I have migraines. Did you call your Dr. If not you should make a appointment and get yourself checked out. I had a terrible day at work today, all I did was cry and think about my life down the road. I would like to talk to someone that has Polycythemia and see what kind of symptoms they have. I am going to call the Cancer Clinic tomorrow and maybe they have someone that I can talk to that knows a little more about this than my Dr. My parents are thinking of sending me to the Mayo Clinic for full testing to see if I really have this Polycythemia.For them to do a complete round of test it will cost us about $15,000 because I am from Canada and have to pay for all the test, but when it comes down to it, it is only money and we can't take it where we are going, so we might as well spend it now. Talk to ya soon.

 
Old 11-01-2004, 06:26 AM   #12
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Re: Polycythemia Rubra Vera

Hi,
My name is Paul and I have had PRV for 2 years and I did not consider it to be such a big deal until coming across this board and reading what other people have to say. When I was diagnosed I was 48 years old and I started having black outs and then starting getting viscious pains in my chest. After all the tests and a Marrow Biopsy the doctors diagnosed PRV. I started out having about 8 weekly phlebotomies but then ended up with a whole lot of deficiencies which caused problems, so I started using HYDREA. Sure there are side effects but they can be overcome and I manage by taking between 2 to 4 grams(4-8 caps) capsules daily to keep my blood in order. I take these at night before going to bed as I find the headaches too interfering in the day. I run quite a normal life and I race motor cars on a fortnightly basis so I don't let the disease get the better of me.
I have recently had a few problems with pains in my hip and lower legs that I have determined is coming from the Hydrea and we are trying to get to the bottom of this as I cannot find any literature that discusses this. If anybody would know if Hydrea is Neurotoxic I would be glad to hear fom you.
Good luck to you all.

 
Old 11-01-2004, 11:41 AM   #13
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Re: Polycythemia Rubra Vera

Hi Everyone,

I have some encouraging news for you. My Grandmother had Polycythemia vera too and she lived to be 86. She had regular check-ups with the hematologist and used to take medication for it. She took the medication for years and had no problems with it. I'm not so sure if it's hereditary or not but my older brother also had it. He was 40 when he was diagnosed. Sadly though he passed away at 43 from Colon Cancer. His Colon Cancer was NOT caused by the polycythemia. Colon Cancer is hereditary in my family. No one else in the family has ever been diagnosed with polycythemia. We do tell our doctors about it though just so they can be aware.

 
Old 11-19-2004, 09:50 PM   #14
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Re: Polycythemia Rubra Vera

Hi gals - I, too, have Polycythemia Vera, which I've had about 2 yrs. My Doc (hemotologist) took an erythropoiten(spelling) level in the blood that definitely diagnosed the PV without a doubt. I've had about l0 phlebotomies done removing a pint of blood ea time. This time I've gone about 6 months without one. I get a Complete Blood Count done every 3 months. I recently started getting hot flushes (no they're not menopausal) which the Doc says is PV. Before this I didn't really have any symptoms. I see him every 3 months now. I am 73 yrs. young. and sure didn't expect this to come up at this age. It's not too common, but I think it's becoming more prevalent than before. I'm rather nervous about it, but there really isn't anything I can do about it. It's up to the Doc and God. Good luck to all.
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Old 06-23-2006, 02:13 PM   #15
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Re: Polycythemia Rubra Vera

hi!
how is everyone, i was diagnosed wiht polycythemia rubra vera at the end of my freshmen year in high school i was about 14-15, i am now a senior (17) ,the hemetologist just kept saying something to the effect that i had enough symptoms to say i have it but they arent bad enough to do anythgin about , borderline, but now i get blood tests done like every other week it seems i have had about 10- phlebotmies done in like 4 months , i havent had one in a month. just thought i would share , you are all not alone! i know how ya feel, i hate needles i still do to this day i have gotten better but i still hate them specially the phlebomoy needle and aspecially when you have nurses doing it who havnt done one before,

 
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