Polycythaemia Rubra Vera

Hello Christabel,

I have had essential thrombocytheamia (et)for 6 years which developed into Polycythaemia (PV) a year ago. I used to suffer from migraines on a fortnightly type basis, however once the haemotologist put me onto a low dose aspirin called cartia daily I have not suferred from migraines since. I know how you feel with the tingling burning, I get it in my legs and feet. I used to have pale skin but since getting PV my face has a healthy glow, which people seem to think that I am looking good but on the inside it is a struggle to get going as I am constantly tired. It is worse if I am sitting at the desk for a long time. I am 37 and live in Australia. I dont know any one else with PV. I have 10 hydrea tablets a week and venesection every 6 weeks.

Anyway I hope this helps you

Kind Regards

Warwick

[quote:ac2ccd5a89]Hi, I've been recently diagnosed with Polycythemia Vera. I have e nlarged spleen. I get phlebotomies (drawing of blood), and feel much better. I used to have sweats, and hot flashes. Now this is not as bad. I am now on mild cancer drugs, and sleep better. My left shoulder pain is less.

Marla Martin[/quote:ac2ccd5a89]

Dear Christabel

My Mum was diagnosed with PV lastyear and has been treted with vensections and aspirin. In July she was prescribed hydroxycarbamide and took 1 tablet daily but after 3 weeks, with no improvement in blood count she is taking two. She is now suffering from severe pain in one foot and can hardly walk. Her specialist has also sent her to orthotics and does not appear to link it to the chemo tablet. I would be very interested to know how you are now and if you have found any relief.

Best wishes

Sandra

Hello,

My haemotologist has put me onto antigout tablets, apparently the hydrea and increased cell turnover increases the amount of uric acid in our system which can cause the swelling in the joints, gout and intestinal ulcers. I have had the joint problems in my fingers but the antigout tablets are helping.

Best of luck

Warwick

Hi

Thanks for sharing your information as very helpful to hear of fellow sufferers experiences. However she has been tested for gout and even x rayed in case it is a fracture but both were negative. Don't know if foot problem is due to the PV or related to treatment with hydroxycarbamide. Her haematologist and GP don't seem to be interested in treating any of the symptoms, only focussed on reducing the RBC level.

Sandra

Hi,

Just adding my 'two pennyworth'.

I was diagnosed with PRV from about 20 years ago following a liver transplant which was required after a blood clot. Unfortunately a further 2 transplants were required, but not due to the PRV.

I don't suffer too much except occasional fevers in varying degrees. I am generally tired and lethargic in the mornings, which led me to stopping work after 9 years because I couldn't maintain the attendance necessary.But the agreement was very mutual.

I don't have any outward symptoms and it is difficult to explain to others that I am unwell or have been unwell.

I have been taking Hydroxycarbamide and Warfarin since the first transplant, along with medication specfic to dealing with the transplant inc' immunosupproession.

I gather I am fortunate in not having any painful conditions or anything that disables me in the long term.

Nigel

Hello,

I was diagnosed with Polycythemia about 5 years ago.

I have visits to the hematologist whenever he says to come, my red blood count fluxuates between normal and high.

So fat i have not been put on any sort of medication, nor have a received any form of treatment. i have my blood checked every time i have an appointment.

I first Visited my doctor due to have dizzy spells, this i have been told has nothing to do with my Polycythemia. Other than the dizzy spells i personally did not suffer from any symptoms that would be felt or seen.

Since diagnosis i have been told i am slightly jaundice also, i have always suffered from tiredness but have put that down to the fact i have trouble sleeping, always had trouble sleeping.

More recently i have become worried about my Polycythemia, as i am having hot flashes or flushes, my back and chest starts to become itchy or tingly and i become red ( sort of like brickily heat), i am also quite active and i would consider myself to be 'fit' , but upon buying a HRM (heart rate monitor) i noticed my HR was very high during exercise, This has me concerned and i am about to see my hematologist again. ( my appointment has been brought forward because i went to see my GP.

I have also noticed that i get muscle injuries more often than most people and they take longer to shake off than ' normal' people do.

Has anyone else have similar experiences? i am wondering if the Polycythemia has anything to do with my HR, and muscle injuries. Once i have seen my Doctor i will post back.

Thank You

Barry

Hi, fellow sufferers,

I was diagnosed with polycythemia a week ago, after a blood test.

A bit of medieval blood-letting (150mm. Then it stopped flowing) and half an aspirin a day, has alleviated the headaches, pain behind the right eye and visual migraines. Phew.

The doctor referred me to a haematologist. Haven't seen him yet. Wondering: what is the point? To be told they don't fully understand what causes the disease and don't know how to cure it?

I'm 70, male, and live in Australia.

I would appreciate any further information about possible causes and cures. I

believe in being my own healer as far as possible.

Thanks, and good health to you.

John

Stick with it John.

They may not know everything but they know more, I'm guessing, than you (or I) about it.

If left untreated it can lead to big problems. In my case a liver transplant due to a blood clot caused by PRV.

Bets of luck

Nigel

Hello All,

Well i have visited the haematologist again since my 1st post. it would appear that non of my current issues ( high heart rate or itching and skin going red, muscle injury) have anything to do with my Polycythemia, or thatis what he said atleast.

I had blood tests done while i was at the hospital and all came back 'normal for me'.

I have been told to go back in 12 months for a check up. so then it will be 6 years i have had this disease (that i know of).

I will keep you all updated.

Barry

Hi Barry, I noticed you have itching, red skin, and hot flashes. These are all classic symptoms of PV, I certainly had them before being diagnosed. Also, you mentioned rapid heartbeat. I had it while eating too much black licorice. Also when I took Niacin to lower my cholesterol. If you are on any meds, check side effects online just in case it's that. I take Hydroxyurea for my PV and it works very well to control my blood count. Also, when I had a high blood count, the doctor noticed it made my blood pressure go high. When the red blood count is high, there is also a high volume of blood and that makes the blood pressure go up.

Hope this helps.

Harrishill1

Hi Harrishill1,

That is what i thought, but when i brought this to the attention of my doctor he was not interested. he told me that he had done all the tests and that these symptoms are related to specific polycythemia, just not mine as my tests came back negative.

i am not on any meds, my levels fluxuate from high(ish) to normal and have not become any worse over the past years so he just keeps tabs on me.

Barry

Barry,

If your doctor won't treat the symptoms as related to PRV, then you should push him to treat them how he sees them. But because he doesn't relate them to PRV, is no reason to not treat them.

Nigel

Hi, just a comment about treatment for PV. I have looked up treatments, side effects, etc. Sometimes treating PV has to be very careful. If your blood tests come back just slightly high, it's better not to treat. Some doctors treat with only aspirin. That's because the meds I take can actually cause my disease to turn to cancer. My blood runs too high. That leaves my hematologist no option so he has to give phlebotomies or Hydroxyurea. Also, it's not good to continue with phlebotomies for too long. If possible, they usually will start to give meds instead. Therefore, Barry, I see why your doctor doesn't want to treat only a little high blood count.

All he can do is monitor it.

Harrishill1

Thanks Nandrews for your response 27th Jan.

Yes, blood clots are a risk, and with possible serious consequences. Sorry to hear about your transplant.

I'm continuing the roller-coaster medical process...

It occurs to me that because my blood has too many red blood cells and so too much iron, then maybe I should eat less high iron content foods. Does anyone have an opinion about that?

It also occurs to me that because my blood is too thick and so prone to clotting, then perhaps I should eat more high salicylate containing foods. Does anyone have an opinion about that?