Polycythemia Vera Member Introductions

My husband has polycythemia vera & his father has MDS & our niece has been diagnosed w/bone marrow failure.

I am Ron and have polycythemia vera and would like to talk with anyone that has the same and has knowledge of the disease.

I am 45, I was dignosed with PV since I was 14 years old. So far I "ve live a normal life. Sometimes I have a lots of headache, I do phlebotomys quite often. my DR never let My Hematocrit to goes up beyond 45. Very often while I am working I am feeling to tumble down. Besides my leg itching me a lots. Sometimes I feel so tired. It will be nice If I now someone to speak to about it. My wife does’nt understand it and it is very sad that she think That I don’t have anything because the way she acts

new diagnosis of polycythemia vera

I have had polycythemia vera since feb 2005 what exaclty is this, I go to Hemotologist every 3 months but only to tell me nothing, I have had increased number of virual infections and my strength is very low and I just can not do what I use to do.

one of my relatives was recently diagnosed with P

My 62 yr. old husband was diagnosed with PV one yr. ago.
He has been having phlebs every 2 or 3 months with no difficulty.
I have been reading the missives on the other site and have learned a great deal from others while not actually joining in the discussions.

My name is Linda, I have type 2 diabetes and was told today that I am now making too many red blood cells and would like to know more than my doctor seems to want to tell me. Does anyone know why your body does this and what are some symptoms and results that can happen with this? I would appreciate anythin anyone can let me know. Thanks in advance, Linda

My dad is suffering from Polycythemia Vera and has had this horrible disease for about 20 years. He is now 75, and not doing well at all. He is in the hospital, and it seems like the doctors have given up on him. They say there is not much more they can do for him. His spleen is very enlarged, and he is extremely uncomfortable. He is having troubles breathing, and has also been diagnosed with cellulitis in his legs. He cannot walk and is very depressed. I know he has tried several treatments, but none of them has worked. He seems to have side effects from some of the drugs the doctors tried. Does anyone know of anything else that can help him. The doctors want to send him home with hospice, and we are all afraid that this is it for him. Has anyone tried alternative medicine?? Any answers would really help.
Thanks a lot!!!

My wife has PCV and is under a doctor’s trearment. Her blood counts are under control but she experiences itching, mainly in her legs at night. What can she do to alleviate this? Is there any place she could go to be examined? Does anyone have any suggested treatment for the itching? She currently takes 10mg of Doxepin before bed.

I have polycethemia

i am intereted in pv because i have it i want to connect to others for a support group and to learn about it

I have been told by a Hemotologist that I may have it and I would like to know my options for a cure?

my name is darlene i am 56 years young and have had p.v. since july of 2005

wanting to get others information in regard to the Pvr blood disorder, i am 63 and in good health. thank you

I have just been diagnosed and do not know anything about tjis disease

Am 32 year old with PRV, diagnosed approx 2002. Always interested in other people’s experiences and answers.

I am interest in this condition, because my husband has it, and I want to learn as much as I can about this condition, and talk to people that knows something about it.

I am newly diagnosed with PV–and suspect I have chronic myeloid leukemia (not testing positive, but have the sx).

I am curious about learning more about how to live more fully in the day to day process and to be aware of what is coming next.

Currently, I’m taking hydrourea 2 tabs daily and weekly phleb draws (for next three weeks).

Sure don’t want another bone marrow biopsy anytime soon.

Biggest problem currently is the ankle and feet swelling.

Thanks for any information, Jeannette Sense

I am checking things out for my husband