Dont worry will not help the condition is not cureable but is treatable usually with aspirin,venesection(taking blood off you)or Hydrea (a chemo drug you take in low dose).Any one or all are used.Most people respond well to treatment & can expect to live a normal life span.Keep tourself fit & heathy & trust your Dr. Try looking at the MPD foundation website (USA) or MPD support(UK) they are the best , there is a lot of outdated rubbish on the net,also some recent discoverys & new drugs on trial at the moment.Hope this helps.

Hi Maggie! I also have polycythemia, was diagnosed about 4 years ago. I am 42 years old. so far I've only had to take the low dose asprin and once in awhile have to have a phlebotomy (a bag of blood taken from me) but I know it won't be long before I have to start Hydrea. No blood clots yet....fingers are crossed!

Hello! I am 49, woman, diagnosed January 2010 with PV. I didn't know what was wrong with me, face flushing... and other strange symptoms, pins & needles sensation in my feet.... anyways... I have had several phlebotomies, and my count is down to 42 at the moment. I go for lab work once a month.
It's treatable, but not curable. I am still trying to really understand it all. It helps to support one another!
Bless you, and take care.
Theresa
Burien , WA

Hi Maggie, I have had polycythemia for about 20 years. Have had a ton of phlebotomies over the years but not for a while now. I finally had to have my spleen removed 2 years ago. But I have lived a very normal life. Probably the worse thing about it is that I have to have my blood tested once a month. I am currently taking a very low dose of melphan which my oncologist is slowly weening me off of. I could not tolerate hydrea. Try not to worry but I know that is easier said then done! Take care.
Donna

Hi Maggie

As others have mentioned the Condition is Treatable, although Not curable. The Jak2 gene is generally the cause of our problem.

Ive had this condition some ten years althou the Jak2 gene caused me many problems some 33 years ago when it caused a blasting of the platlets ... But since , its JUMPED ship and Now caused the Increesed red Blood Cells .

Alas My PV wasnt diagnosed until AFTER my second Blood Clot... one to the leg, then some 18 mths later an embolism... even though Warphrin was added to My medication{ Blood Thinner] yet another Clot was to strike a year later... this one in My small Bowel, which caused 4 Major ops over Two yrs , Gut remvoal and many other problems whichwill Plague me all My days [ let alone an treatable Brain heamorage which effects the CNS ]


Its Imperetive you keep your INR levels checked along with keeping your appointments...I was just very Unlucky, as My Inr levels never emain consisitent, I still have it checked evey two weeks...

Mnay still work and go about there Daily Lives pretty Much Normally Until youR HCT increases which in turn will lead to a a PHLEB...so be of good Heart.

To many other Conditions keep me from the Work Place ,

Regards
T

Sorry..I meant Untreatable .

I was found out my polycythemia over a year ago, I learned that God is in control of everything and the best thing that could happen to me is that i will go into my next life with no problems. Keeping faith in God and close to him has helped beyond anything, I have was very anxious etc and then i asked god to help me because i could do this alone and after that i felt like i was on a cloud, i have my days but God helps me through all of the bad stuff. It's good that you have support like this on the web but more important to have the spiritual support from God who is the big daddy of everything. Please take care and everything will work out for you. When i was sad he ( god ) made me glad.

This site from the Mayo Clinic is excellent
http://www.mayoclinic.com/health/polycythemia-vera/DS00919/DSECTION=lifestyle%2Dand%2Dhome%2Dremedies

The other comments are truthful. God Bless.

I have lived with this since 1974 as a 10 yr old, 46 now, do not have the Jak2 gene, no known cause for me. Lot of physical symptoms but tring to keep in control with phlebotomies every 2 week(lots of sticks) take asprin daily to prevent clots. Levels have increased with menopause. Headaches and heart palpations are troubling.
Going on an iron free diet soon to see how that works, no meats, brads or cereals,nuts or dark green veggies.

http://www.mayoclinic.com/health/polycythemia-vera/DS00919/DSECTION=symptoms

The above website is a good information source. From what I read, everyone with this disease have this gene defect. I can't say any any more than Joht below, who is right.. God Bless You.

I was diagnosed three years ago (I was 26 at the time). I take Lovenox (blood thinner) but I've recently had a clot. All my blood counts have gone back to normal, so my doc does not know what's going on.

I've been dealing with pv since o5 just was wondering how others deal with this disease?

I've been dealing with pv since o5 just was wondering how others deal with this disease?

Like others, I am annoyed that my hematologist can't explain this disease to me. When I an feeling unwell he can't confirm that my symptom might be caused by the polycythemia vera. That this disease was confirmed in my case by a bone marrow biopsy makes it seem all the more threatening. At first I told a few friends that I was seriously ill. More recently, I've realized that it's not that serious. Just rare and not well understood. The symptoms that I think are caused by the condition in my case are unexplained bruising and pain in my feet (sometimes severe. I am low on energy but I think that may be something else. I would like to continue an exchange of information with others who have this wierd condition. Carol

I am 50 and just diagnosed with PV. My hemoglobin count was 23 (heart pumping jello) and I started the blood-letting process. After giving blood once a week for 6 weeks so far, my hemo count has dropped to 19. My symptoms causing me to go to the doctor in the first place was a couple of fainting spells. I also had a red face too for a year and thought it was rosacia. However, I always felt fantastic and still do, maybe because I cycle. I'm 6ft 1-inch at 198lbs. Have never felt dizzy or wierd after giving blood. All I do right now is take a baby aspirin twice a day and stay away from red meat (do miss those steaks).

I would suggest that my fellow PV-iers get an echocardiogram of your heart and neck veins to be sure that they are clear. PV thickens blood and having restricted veins will not help.