polycythaemia ruba vera

I am truly sorry that you are suffering so much...God be with you.  I am a senior

and after 2 different cancers now have poly vera.  I have blood taken every time

my HCT (from a lab) shows more than 44.  I refused any meds and went on a

restricted diet of iron free foods (such as NO red meats and NO to some selective green veggies).  The tall tale sign of my illness (is as you said intense heat in the palm of my hands..which turn brillant red).  I drink 50 oz. of water daily and walk at 30 min. each day.  You did not state what your HCT is or what is your diet or water intake or excercies..Are you doing any of this.  Wondering???

Hi Wayne. I understand that PVR is said to be environmentally caused. I have PV which is caused by having the jak2 gene mutation. However, both illnesses are caused by bone marrow problems. I at first had phlebotomies (blood draws). Then my Haematologist out me on Hydroxyurea. It has helped many symptoms to lessen. The itching pin prickly feeling is much less. I too don't like the heat. However, I'm told we can live a normal life span. We shoulg et daily exercise, but not when it is too hot. I go early morning or late afternoon. Or, go to the gym where it is air conditioned. I agree that we shd not eat much red meat. Best wishes, and hang in there.

universes1

Hi Wayne. I as well am now getting to the end of many tests. Three more to go. I am being tested for what the Hemotologist thinks it's a secondary Polythermia. I do get a itchy burning sensation but it's off and on. I have two phlebotomy's where they take a unit of blood. At the moment the Hemotologist has requested no more until she has a firm diagnosis. I see her Feb. 12. I am only having a low dose aspirin per day and Vitamin B12 injections once a month. The aspirin has now been changed to a blood thinner because I had to go to emergency December 23rd. I was having trouble breathing. After some tests and cat scan it showed tiny little pea sized clots in my left lung. I feel much better now. Trouble with this is the thick blood which could cause a stroke or heart attack. It sure seems like so many tests but soon I will have a diagnosis and put on a treatment that will be for my own diagnosis. I will be glad to get on with things and know just what Inam dealing with. Hope you feel better soon.

Hello, I'm also positive to jak2 my hematologist saying PV, had 4 blood draws so far, due to a blood clot in my liver and on warafin they have delayed the bone marrow biopsy.

I get the night sweats, pain in my left back (spleen) when I move or stand on my feet to long,

I can only eat half the portion (thats a positive).

I eat alot of red meat so will slow that down, actully I have taken a liking to salmon.

Waynne, I hope you find a way to cope with PV, I think we all can do with feedback on good ideas how to cope better.

I live in Australia so happy my work is in an air conditioning office,

I am new to this forum. I am beyond happy to have stumbled across it. I asked a question and the quick answers back to me was so impressive. Nothing like talking and sharing with the ones that have the same blood disorder. In such a short time I have learned so much from the ones in this forum and from different countries. I am Canadian and have found out from this forum that the tests and treatments seem to be the same. Soon I will find out and looking forward to getting my last three tests out of the way. I have had so many tests so far. It's hard to get my head wrapped around why soooo many tests. Never been tested for anything like the tests this requires. I know know from this awesome forum to be patient and to find out this testing is normal. So I chose now to be patient and go with the flow. Will keep my new friends posted on my final steps of diagnosis.

Jak2 is part of the explanation for this disease.  I am American and did not go

thru any tests as you describe.  Taking my symptons of nose bleeds and

DVTs the onocologist taking a lab of the blood which contains an element of

HCT this is used as a guide for the doctor to order blood letting (Phlebotomies)

As i stated in another of my replies I am doing well with the water, NO red meats

walking and baby aspirin.  Maybe overseas in Europe or Canada it is more complicated but I always prefer the simple approach. HCT stands for Hematacrit

I may have spelled that wrong.  Ask you doctor.  One needs blood lab work to determine what is going on with your blood which if the source of the Poly v.  Good luck!!

What I find so astonishing is the rapid increase in the diagnosis of so many young people now afflicted with this disease.  Is this because of the increased awareness by the medical profession or from the research now in progress.  Some of the comments by sufferers here really do need further explanation.  Suggestions of an hereditary factor and of environmental effects have never, in my experience, been so realised.  From the kidney infection remarks this in an aspect I personally had never seen presented  before, but it makes a great deat of sense now.  Let us hope that those who can make a lasting difference to this uncomfortable complaint thoroughly read these comments by the patients and are able to take things forward to an effective cure, also suggested in this forum.  There does not seem to be a solid pattern emerging as most people are  affected in differing ways, but there is plenty of evidence to support the view that something needs quickly to be available to treat and reverse the apparent advancement of this disease.  As a long-time sufferer I wish all the contributors to this forum, a healthy future.

I agree Wayne! After several tests I was told my blood disorder looks like it could be Polycythaemia Ruba Vera. My response was "what is that?". Never heard of it. My family and close friends said the very same thing to me. What is that? After getting the Doctor to write it down so I could google it I would have been in the dark. I was simply told at the beginning "large red blood cells". I googled that at the very beginning of this in July. What I found on goggle was Macrocylosis. The treatment of choice was simply Vitamin B-12 injections which I am now having. As my symptoms unfolded and tests after tests now it could be Polycythaemia Vera. To date my tests are fine so my Doctor said "this is a mystery". That is when I was referred to a heamotologist. We don't have one in my city so had to drive to the nearest large health centre. More blood work was done. After she read all my test results she thinks what I may have is a secondary Poltcythemia. Therefore more tests. I go to the sleep apnea clinic tomorrow. This past Friday I saw a respirologist. I am booked for pulmonary testing next month and an ultra sound on my heart. After these results are in then there will be a diagnosis. I see her Feb. 12th however the pulmonary test is booked after my appointment with the heamotologist. Thanks to this forum I now know there are others with the same disease. I don't even share to others when they ask "why soooooo many treats? What are they looking for". Hard for me to answer because I didn't know myself. The main question I get asked is "what causes it". After joining this forum and reading some of the symptoms I think I have a good idea. I will keep everyone here posted as this unfolds to perhaps help any newcomers.

Forgot to mention my Jak2 came back negative. That has generated more testing an not being able to offer me as yet a final diagnosis.