polycythemia vera

By angelhart0464 Latest Reply 2012-07-17 11:32:25 -0500
Started 2012-07-15 00:28:49 -0500

does any body know any thing about polycthmia vera and what can u do for it my doctor is no help .thank you for listening

8 replies

caroljanej@yahoo.com Franklin
caroljanej@yahoo.com Franklin 2012-07-17 11:08:20 -0500 Report

Good Morning, I just saw this and nearly screamed. Do not under any circumstnces "donate blood monthly", that spreads the agony. If the person taking blood is on the ball and asks the right questions they wouldn't accept your blood. Also there is the problem that a phlebotomy once a month will lead to anemia. Some have the draw once a month until the numbers (CBC) come under control but it is done very carefully under Dr. supervision. Poycythemia is, as Mays posted a bone marrow problem. There are plenty of us gals out there with the prolem. Mays answer is a good beginning but please #1 your primary care Dr. is not the one to handle this. How was it dx? Find a hemotologist/oncologist. #2 get a work up at teaching hospital. John Hopkins, Duke, Stanford, Mayo Clinic, Anderson in Houston. One of the big ones, there are not a lot of people w/PV, we are part of a larger group called MPN - Myleoperliferative Neoplasm/ new designation from WHO. Also referred to MPD - Myleoperliferative Desorder. Please go to MPNforum, MPN.net &/or MPDchat.com Also on You Tube from Mayo Clinic look for the videos from Dr. Ruben Mesa (the AZ clinic) is one of the leading authorities on MPN's. We are like you guys, most people really don't know that much about Diabetes; it takes some reading and folks only do that much research if it pretains to them. Please get outside help - hem/onc, support group, google, large hopital. I knew something was wrong and kept following my primary care Dr., who didn't know anything. It all became very clear when the Dr. at the hospital went looking for the reason for my stroke! Don't wait - or panic - it is controllable, but the Dr. has to know what he's doing. Go get help, and lead a normal productive life. Good luck. Post questions if you want and I'll try to answer. Love and Prayers Carol J

arsmithsr 2012-07-17 11:32:25 -0500 Report

And just how would it spread the agony???? It is a genetic condition blood does not reproduce it is made in the bone marrow. IE there is nothing to spread to another! But yes you should see a Dr. where they will drain a pint every so often to thin the blood and they will throw it away much better than giving it to people who need it. I'm not a Dr. but from the basic science I know I don't see the problem I guesse you could ask a Dr. or phebotomist about it and see what the rules are concerning donation in your area.

MAYS 2012-07-15 04:17:53 -0500 Report

This is interesting:

Polycythemia vera occurs when a mutation in a bone marrow cell causes a problem with blood cell production. Normally, your body carefully regulates the number of each of the three types of blood cells you have. But in polycythemia vera, the mechanism your body uses to control the production of blood cells becomes impaired, and your bone marrow makes too many of some blood cells.

The mutation that causes polycythemia vera is thought to affect a protein switch that tells the cells to grow. Specifically, it's a mutation in the protein JAK2 (the JAK2 V617F mutation). Most people with polycythemia vera have this mutation. Doctors and researchers don't yet understand the full role of this mutation and its implications for treating the disease.

It's not clear what causes the mutation that leads to polycythemia vera. Researchers believe the mutation occurs after conception — meaning that your mother and father don't have it — so it's acquired, rather than inherited from a parent.


Factors that may increase your risk of developing polycythemia vera include:
Increasing age. The risk of polycythemia vera increases with age. It is more common in adults older than 60, and it's rare in people younger than 20.

Being male.
Polycythemia vera affects men more often than women.

Having a family history of polycythemia vera.
Having close relatives with polycythemia vera may increase your risk of the disease.



MAYS 2012-07-15 04:00:22 -0500 Report

Some people refer to this as "Cancer of the Blood" due to the rapid production of blood cells (red blood cells, white blood cells and platelets are increased).

The objective (based on everything that I read on the subject) is to reduce the thickness of the blood, one of the most effective ways of doing so was to remove a pint of blood weekly to help do this (reduce the thickness)!

"Polycythemia vera is a disorder of the bone marrow. It mainly causes too much production of red blood cells, although the numbers of white blood cells and platelets are also increased.

It is a rare disease that occurs more often in men than women, and is rare in patients under age 40. It is usually associated with a gene mutation called JAK2V617F. The cause of this mutation is unknown."



These video clips may interest you:



My advice to you is to seek out a specialist, although you may read about things that you can do, or eat, this is a very serious matter that should be dealt with by a medical professional, there is a great deal of testing and lab work involved in the diagnosis and treatment of Polycythemia vera.


Don't take a chance with your health, seek out the right help!


Next Discussion: siblings »