Blood Disorder: Polycythemia Vera

Rare, Chronic Disease that May Go Undiagnosed or Misdiagnosed

By Herstory, published Jul 23, 2006
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Do your hands or feet ache all the time and you bruise too easily? So did your father? Did your grandmother soak her feet in Epsom salts and rub soothing peppermint creams on them? Maybe it’s just the old family joke of your “flat feet and thin skin,” or maybe it’s more. . .

Polycythemia Vera is a rare chronic disease of unknown origin. Other symptoms may include dry skin, itching, headaches, dizziness, blood clots or thrombosis of any kind, and sweating.

Research continues on this curious condition. It is easy to diagnose with a complete blood count (CBC), but is often missed because of fluctuations in blood counts and can be misdiagnosed as Lupus or as a thyroid disorder. Most patients are diagnosed at around age 60 and polycythemia vera is rarely diagnosed in people younger than 20 years of age. It is considered a chronic disease, but it can have fatal complications.

Polycythemia Vera is caused by a change in a blood-forming stem cell in the bone marrow. The result is overproduction of red blood cells, causing thickening of the blood and clotting.

The main treatment is regular monitoring of blood levels and phlebotomy when needed. That is, blood is withdrawn from the patient to bring the red blood cells within normal range. This procedure is done at various intervals, according to the patient’s needs. The immediate result is relief in symptoms such as headaches and profuse sweating. There are other treatment options as well.

In some patients, the disease goes into what is called the “spent” phase, in which overproduction of red blood cells are no longer an issue. The opposite problem occurs: Overproduction of white blood cells and platelets causes thinning of the blood and unexplainable bruising and pain, as well as difficulty in getting bleeding to stop.

The main treatment for the spent phase is regular blood monitoring and blood transfusions. There are a few other treatments that may help.

Blood Disorder: Polycythemia Vera

Polycythemia vera is a rare, chronic disease of the blood.

Takeaways
  • Polycythemia vera is a rare blood disorder.
  • Polycythemia vera masks itself with many common symptoms.
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Very interesting article. Excellent information. It's good to learn about things like this.

Posted on 11/15/2007 at 1:11:00 PM

 
My youngest daughter was diagnosed with PCV at birth. She was put in the NICU and eventually had 40 cc of blood removed from her umbilicus. It was very scary at the time but she has been fine ever since. I later found out that my nephew had PCV at birth also. No one has checked into it any further. I'm going to have another baby soon and can't help but wonder if the same thing will happen to this one!!!

Posted on 08/21/2007 at 9:08:00 PM

 
Thanks much about the info re: the family blood testing to catch it early. No one has ever mentioned this before, esp drs. My grandmother died in 1985 and she'd been diagnosed a few years earlier. But, the drs. weren't worried about the PCV as much as that she had major heart probs. which is what she died of.

Posted on 05/06/2007 at 11:05:00 AM

 
What a small world, Kassidy! Hind sight is 20/20. We're quite sure my paternal grandmother had PV. She died undiagnosed in 1981. My dad's symptoms peaked in 1996, and diagnosis made his remaining time in this life much easier for him.

Posted on 05/06/2007 at 12:05:00 AM

 
My maternal grandmother had this too, several years ago when no one ever heard of it.

Posted on 05/04/2007 at 8:05:00 PM

 
My Mother has PCV and was diagnosed by having a simple blood test after having a reaction to fiberglass at work. She had been complaining for years to her General Doctor who told her it was all in her head. It was a young new doctor at a Check Medical center in Seattle Washington that wanted to run more test because her blood test didn't look right. My 15 year old son has many of these symptoms and he was tested today for PVC. He itches badly after a shower and has nose bleeds daily. We have tried everything for the itching after a shower and nothing has worked. I was told to try taking a cool shower instead of a warm shower. After talking with my mother she suggested that he get tested.

Posted on 05/01/2007 at 3:05:00 PM

 
I was diagnosed with PCV about 2 1/2 months ago and go for weekly therapeutic blood treatments. Im 26, so this is one of those "early detection" cases. I believe I've had it for quite a while. I can tell you this, its not fun living with, as it has many symptoms and can make you miserable. Im currently also on a medication called Hydroxyurea, or otherwise known short as Hydrea. When I was diagnosed, my RBC was EXTREMELY high and is still considered very high. I wish there was a cure because Im miserable.

Posted on 04/10/2007 at 8:04:00 PM

 
Thanks for the info. I love learning new things and anything medical especially draws my attention. This would make a good short lesson for high school biology. :)

Posted on 03/09/2007 at 7:03:00 PM

 
My father, now deceased due to unrelated illness, battled this for years before diagnosis. Once he got the right 'news' it was easy to treat and not so bad to live with.

Posted on 02/12/2007 at 6:02:00 PM

 
I didn't know about this. Thanks for sharing!

Posted on 02/12/2007 at 8:02:00 AM

 
my sister has these bruises on her legs, esp the thighs. It looks like someone poked her about 50 times. and she has no clue where its from.. anyone know?

Posted on 10/28/2006 at 7:10:00 PM

 
Yes, the itching is terrible. If you are not allergic to almonds, you might try rubbing in a little "food grade" almond oil. I have to go to a local vitamin store to find it. A very small amount of almond oil goes a long way, so don't be too put off by the price. A small bottle will last a long time. Hope that helps you a little.

Posted on 09/11/2006 at 8:09:00 PM

 
I have pcv and have all the symptoms you have talked about. The itching is bad especially right after a shower. If anyone knows how this can be relieved please tell me. By the way good article

Posted on 08/29/2006 at 7:08:00 PM

 
A very informative article, Lynn. I'm sure my daughter who is a medical lab tech in the Seattle area has heard of this rare condition, but I haven't. I'm sure that this will be of great interest to those who may unfortunately suffer from Polycythemia Vera.

Posted on 07/25/2006 at 2:07:00 PM

 
Nicely written piece about a little known condition. I am sure people researching Polycythemia Vera will be grateful to find the information.

Posted on 07/14/2006 at 7:07:00 AM

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