Polycythemia Vera Member Introductions


#43

I was diagnosed in May 2006 and would like to learn a bit more about the condition by connecting with others.


#44

I am interested in this topic due to my mother was diagnosed in Jan. now has had a pacemaker. I want more info and other peoples ideas as to this condition.


#45

I’ve got PV and I had some questions…

  1. Who hosts your board???
  2. What is the name of the board software that you are using???
  3. RU aware of any special diets for people with PV???
  4. I’ve looked at some other sites and they said that this disorder is not heriditary, but it does follow askinazi jews. Do you know anything about that???
  5. I was wondering if anyone has had experience with the following… I’ve had the red face thing, but it’s intermittent… somedays, I’m red as a beet and some days I’m not… is that typical???
  6. My hand burn, mostly, when I lie down at night to go to sleep… is that typical???
  7. I have also made a website that is much easier to navigate than this one… It has a lot less topics… I hit the reply button, but I don’t even know what I’m replying to…
    anyway, it is http://www.mcgrew-fam.net/GOVBB/
    Most Sincerely,

#46

PV is hereditary i have 2 great relatives who had this and was also told this by a doctor out of clev. clinic. the burning in your hand this is what happened to me about 3 mos. before i had a stroke my hem level was 20 at the time of my stroke and i was doing phleb 1 time a month then. the hand burning is not as a general rule typical please have this checked, if only my doctor would have listened to me back then!! i will respond with more info soon. your blood pressure is your hem meter take it often and remember the second one counts.green tea and a asprin a day does wonders.


#47

I apologize for the misunderstanding… but, I got that information
from the US National Institute of Health, and they said that it’s not
hereditary… My mother also told me that my great grandfather on her side
had it… she keeps telling me that it skipped a generation and that she’s
sorry that she gave it to me… I told her what NIH said… So, they need to
fix that…

Thanks for all the other information… I had carpal tunnel repair
done on both of my hands… I’ve had a high hct & hgb for a long, long
time… at least, since I joined the military in January 26, 1986… in 1988
I went to the desert and got a nose bleed that lasted for 3 days… They
never told me anything about PV… Until last week a doctor at the VA told
me that I have PV… he showed me my labs and why I had it…

Now, he’s scheduled me for a bone marrow aspiration… what do you
know about those??? I’ve read up on the procedure… but, I would like to
know if it hurts too awful badly… I’ve had three knee surgeries and before
the first one they had to drain fluid from my left one three times in 9
months… they will NOT anesthetize you for knee draining… not even a
local… and it hurts a lot… Those cortisone shots hurt pretty much
also…

So, does bone marrow aspiration hurt more than knee draining or
steroid shots in the knee???

Most Sincerely,


#48

Hi,

I was diagnosed PV 1 ½ years ago when my platelets were 700 count. They stayed that way while I had 3 PB’s and fainted with last one. They since told me no more as I do not have calcium in my blood. I tried HU one pill a day for a couple of weeks. My platelets then went up to 10,000. So Dr. told me to take 2 pills a day. Two days later I got so sick, flu like symptoms with slight fever, but platelets dropped to 140. Because I got so sick the Dr. told me to stop HU. Then after 2 weeks said to start again with one pill. I did and that night went into terrible chills. I thought I would freeze to death, was nauseated and threw up. The next day I had a rash all over.

Now a different Dr. wants me to try HU again because he says it so much easier to take. I AM CONFUSED!!!
I was emotionally ready to start Interferon. My counts are all up again.

The doctors think I might be overly sensitive to the medications and that I might have a hard time during my treatment. I am 75 and wonder if I can do anything more naturally to get through the later years of my life.

In reading some of the posts, I had a few questions…
what does the term “spent phase” mean?

Also, I would love to hear back from anyone on either medication as it would help me to know more about what I might be in for. I’m waiting for a few more days before taking my first pill in hopes somebody could give me some insight before my treatment begins.

Thank you for your comments and time
Sincerely,
Carrie


#49

HI,
I was just Dx’d with this 4days ago.
So all this is new to me. All I really know is
platelet(sp) count was over 800
WBC over 12
hemocrit over 48
So yeah not so good.
They have already removed one pint of blood from me and am due in 2 ks for another pint removal. yippy.
I cant even begin to wonder how long as test from 2006 ( the last time I really had blood work done) those numbers were fine.
My spouse is freaking and treating me like a china doll and has ‘wrapped me in bubble wrap’ has not allowed me to even rinse a dish… It is getting a bit irritating.
I have looked everywhere to see how one aquires this mutation and IF it is possibly heritatary(sp) or not.
So before I really post anything other tan this I plan to looking through the already made threads to learn more and to mak sure not to repeate an already discussed topic.
thanks
tish


#50

Tish: first off, relax. If you can visualize living your life with “high blood pressure” etc, a chronic condition requiring adjustments in your life, but not really reducing your life span or quality of life, then, you can learn to live with this—another chronic condition. I’ve been diagnosed for almost 3 years now and have learned to monitor symptoms and make adjustments as needed!

Email regularly, as it will relieve anxiety! Enjoy your life!

Jeannette


#53

Hello, i’d like to reply to the person who posted that he/she had swollen index finger. I have PV and also gout. gout sometimes comes with PV. My fingers will swell if I eat foods that cause gout. Also avoid beer or any other alcohol.Gout also comes with some arthritis. Hope this helps. Let me know. reply to “Minna”


#54

I have familial PV, from my Mother, through her father. My sister has it, and a few of my distant relatives have it, from the grandpa to mother, to son. I recently contacted them and they’ve been part of a study from John’s Hopkins. I don’t know any more than that.

I was diagnosed when I was 11 or 12, and have never done much for my disorder. I’ve always had slightly ruddy skin, a tendency to have more bloody noses, and a need to stay hydrated. Besides that, I haven’t noticed many symptoms. Now that I’m 33, I’ve been trying to learn more about PV and take a proactive approach to good health.

I don’t have any health insurance currently, and can’t really do much as far as I know until I do. So for now, I’m trying to lower my blood count by giving blood when I can and leading a healthy lifestyle. Circulatory herbs and spices (ginger, cayenne pepper, garlic, etc) always make me feel better and more lively.


#55

I HAVE POLYCYTHEMIA VERA. I HAVE HAD IT SINCE 2003, OR THAT IS WHEN THEY FOUND IT. I WAS TAKEN HYDROXAREAU(NOT SPELLED RIGHT), BUT I WAS ALLERGIC TO IT. SO I AM NOW ON ANAGRELIDE, WHICH SEEMS TO BE WORKING, BUT LATELY I AM HAVING SOME SWELLING AND SORNESS IN MY INDEX FINGERS, I WAS JUST WONDERING IF THIS IS CONNECT TO THE DISEASEOR SOMETHING ELSE. MY PRIMARY DOCTOR SAID I HAD TENDIIOUS.


#56

Hi, I'd also like to reply to anyone who thinks PV isn't inherited. They really don't know that. It can run in families. My Mom had it and didn't know, she died with a Myloproliferative blood cancer. PV turns to that if untreated. However, she was 86 by then, and died because her heart gave out. If treated, PV may not turn to actual cancer.

They really do not know everything about PV yet. I believe it's rarely inherited. I also believe many people have PV and are never diagnosed. Minna


#57

Hi, I was dignosed with PV since I was 16, I am 50 now. I had a son with the disease too. For me it is hereditareely. Nobody else in my family has it.

besides some head aches, and dizziness I am feeling good, thanks God