I Pvhave Been Newly Diagnosed With

I have Polycythemia Vera. I was diagnosed with high platelets in January 2008. In October 2009 I saw my hemotologist for the first time. He ran tests and I saw him four weeks later when he told me I had Essential Thrombocytosis. My platelets were at the one million mark. My hematocrit was elevated above normal. He felt that I may be heading in the direction of PV. He then explained what phlebotomy was. I then saw him on March 2nd, 2009 and my CBC results ment that my diagnosis now had changed to one of PV. I am just on one 81mg of aspirin a day since October. I have just learned how to use a laptop and how done a lot of research on MPDs and especially ET and PV. I feel that it is really important to connect with other people and to get support. I am also JAK2 positive. When friends and family look at me they know that I have a rare disease but they do not understand how extremely tired I am feeling or the weird things that are going on inside my body and the sore muscles and joints etc.. It will be nice to talk to someone who can relate to what I am going through. I live in Canada and have found more information from US and UK websites. My hematologist is very nice and I feel comfortable with him but he did not give me any website or brochure on PV or MPDS. We have to be our own advocate in all of this. Please excuse any spelling errors I am doing this late at night and without my glasses on. I just turned 50 today and plan on staying positive and enjoying each day. I try to find something to laugh about daily. Thanks for listening to my story. Claire

maky59 maky59
8 Responses Mar 11, 2009

I was diagnosed with PV about 5 yrs. ago when was 50yrs old. I have to say I feel very blessed. When I was first diagnosed my doctor put me on 81 mg. of aspirin a day and phlebotomies about every three months. I have remained on the same regime and I remain a symptomatic. Last May I had a bone marrow biopsy to determine whether I had the JAK2 mutation. I visited a hematologist at UCSF in San Francisco who was very optimistic about PV and said there is so much research being done at UCSF presently about PV and that she believes there will be a protocol to deal with PV very soon. I too try my best to be positive, I exercise daily and have for the past 25 years. I eat healthy, stay away from red meat or anything high in iron.
Please know you are not alone, stay positive and strong. I believe with God's help I can do anything, and look towards enjoying each day, and a bright future. Joyce

G'day Claire I've just been diagnosed as well I'm 36 with young kids 5,6,10 and they don't know yet, all started with gout in my big toe.
Then got blood test done came back with 206 red blood cells, in Australia cals though very apparently had 4 venesections done then.
Got put on a machine not sure what its called but it takes out only red cells heaps quicker.
I've been founding that I'm quite fatigue all of a sudden and need too lay down, I'm on aspirin and allipirnol not sure why as my counts are down still trying to grips with it all. I'm staying positive as I need to for my wife and kids, might have too cut bak on the beers though??
Cheers Carl

Hi there ya same here, all the same with being tired and, acky joints,<br />
ya just gotta hang in there and be stronger, laughter, fun, and hangin out with<br />
good friends, go dancin if u feel up to it, go for an early morning walk, or a late night walk, do things u like to do, I walk @ the beach , I love the ocean air<br />
listen to music, juice, red grapes, help cleans the blood, kale soup,<br />
take vitamins, this all helps me maybe it will help u

Hi maky59: I am a 59-year old female who was diagnosed with primary PV in August of 2010. I tested positive for JAK2 and am currently under the care of a hemotologist/oncologist. I am on 81 mg of aspirin three times daily, and phlebotomies, as needed. I have been told that once the blood counts "normalize" utilizing phlebs and aspirin, chances are fairly good that I will not need any other interventions. PV is a dynamic disease that can (but does not always) transition into myelofibrosis or acute myeloid leukemia. To date, I have not shown any signs of this occuring. I optimize my health in all areas over which I have control. I keep my weight down, eat well, and exercise . . . basically what everyone else does to achieve and maintain good health. The only difference for me is that I am being closely monitored and take precautions to avoid and eliminate all sources of iron-rich foods. Other than that, I have no substantive complaints. I definitely get tired more easily than I did before, but if that is the worst of it, I can certainly deal with that one.<br />
<br />
I wish you the best and encourage you to constantly educate yourself about this myeloproliferative neoplasm (MPN). There is considerable research being done by INCYTE. In their study, they are attempting the utilize JAK2 inhibitors to control the disease. There is also a wonderful doc working through the Mayo clinic named Ruben A. Mesa, MD who you can seek out on the internet. Ross Levine, MD is also conducting research and is all over the net. You can google both of them to get some more clarification on the topic.<br />
<br />
I wish you the best and hope that you will avail yourself of as much information as possible about this condition. May God guide your steps.<br />
<br />
Regards,<br />
Peggy Frederick<br />
Nutley, NJ

I have polycythemia and I am on a cancer drug daily and see the Dr about every three weeks or so. I really don't feel bad just tired a lot. My Dr told me this will eventually burn itself out but would probably then go into inimiac.

I have PV also. Just diagnosed. I have some good internet resourses:<br />
http://www.mpdfoundation.org/mpd_research.asp<br />
http://www.youtube.com/watch?v=5x2VYu7HUXE&feature=channel<br />
http://www.mpdinfo.org/faq/faq_pv.html#q5<br />
<br />
My email is barbaramarvin@telus.net if you want to get in touch.

I hope you find people just to let you know your not alone. This would possibly be easier if you go to the Mayo Clinic site and talk to doctors there. Go to their site and contact doctors of hematology. There are message boards as well everywhere. <br />
I wish you wellness and keep up the faith.

Type your comment here...

I too have just been diagnosed with PV as of Feb 2011. I'm a female who is only 39....38 when diagnosed. I go to the clinic once a week for blood draws...am on 35 mg of coumadin a week, and have phlebotomies as needed. But, hopefully when I see my hemotologist in August she will take me off the coumadin and I will only be on aspirin. But, I did get some news from my hemotologist on my last visit....she said there is new medication being pushed through production right now for when/if my body starts to go the way of Myelfibrosis. She said I really shouldn't worry, more than likely there will be medicine out there that we all can take if that happens. I was so excited. I am hoping this does happen. Many advancements are being made all the time..I keep reminding myself. It really helps me to stay postive.
I hope all is well with the rest of you...thanks for reading!

Wow, I was diagnosed at 40. Really wasn't as compliant as I should have been, its been about 8 years now and just had my second heart attack. I'm on temporary disability but hoping to back to my full time job. How are you feeling?

I'm 40 now. Was diagnosed at 35. Been doing phlebotomies but now my platelet level is at 1mm. Two dr want to putme on hydroxurea. I don't want to due to the leukemia long term effects. Not sure what to do. Also had a pain attack on train near spleen and then almost collapsed to floor. Went to ER and all checked out ok. Don't know what that was. It's pretty scary