Well its over two years since I have been diagnosed with this illness. I have attended hospital on a regular monthly basis and had venesection at just about every appointment. Have been on 1 tablet \"Hydrea\" since diagnosed. Suffer from mouth ulcers constantly. Over last year have had severe pain in my feet and toes - have appointment this week with Orthotics Clinic - not sure how that will help- but willing to try anything. Have basically battled on with this on own - there are no support groups that I can find in the North of Scotland. I do log into MPD Support (Guys Hospital London) but this is to far away for me to join any of their activities. I find people do not know or are not interested in what is wrong with me - illness it is not visible so it must be in my head!!!!!!!!!!!! I find that before my appointments for venesection I get strange tingling feelings in my shoulders and neck - like somethings trying to get through and it can't. Migraine headaches increase more than normal (I have had migraine since a child) generally just feel tired and unwell. Because of the number of times I have had venesection I dread having this done as it is much harder to find my veins and it can be really painful. Have had injections before venesection is tackled to numb the pain. Would really appreciate a chat with people in similar situation as at the moment feel I'm becoming a right old moan and I don't want to be.
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
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
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?
John,
Sorry to be your 'negative' respondent!
In the first case with iron, I must first say I don't know. But I would suggest even if it was the case of too much iron. So long as the 'extra' you are eating is in the form of food then, I'd carry on. The food you are eating will contain many other vitamins and nutrients which you DO want. The traces of them and indeed the iron are likely to be too small to make a major difference. If however you had been taking an iron rich supplement then there might be a need to be concerned.
I believe the blood clotting mechanism is a balance and needs regular monitoring. Indeed I take warfarin to control my INR (a ratio of blood clotting) and that is checked every 6 weeks (every week if it starts varying!). I think to try and assist things by consuming unusually high amounts of food containing anti-clotting agents is a bad move. If your blood is monitored then by you taking extra measures could confuse the medicos who are trying to keep your clotting under control!
You will see that I tend to err on the side of "leave it to the experts"!
Thanks for your sympathies and for the record I ended up with a 3rd transplant in the space of 2 years (22 years ago) but No3 has been perfect. So there you can see why I listen to the opinion of the consultants here more than my own intuition.
Nigel
Thanks Nigel
Sorry I missed your name last time.
All info/experience is welcome, positive or negative.
I see a supposed expert early March. No doubt he'll fill me in with more info.
Meanwhile my blood pressure is down to about normal, and all symptoms have disappeared - after losing 550 ml of blood and two weeks on 150 mg aspirin a day.
You sound like you've had a rough trot with three transplants...
I certainly respect medical science for all its achievements. And I'm just guessing about diet changes to assist the condition.
I'm wary of medical science for a number of reasons: They don't understand how spontaneous remissions occur - which occur in all forms of major human diseases - they don't understand how placebos work, they don't understand how hypnosis works, and they don't understand how to reverse genetic mutations as in primary polycythemia.
But I'll consult the specialist nevertheless. And I'll continue to learn everything I can about Polycythemia from whatever source I can. It's an interesting education if nothing else.
Thanks again
John
Hello
I was diagnosed with Polycythemia 9 months ago. Had several venesections and now take Hydroxyurea (currently 10 tablets per week)
Found this site while investigating tingling in my hands and feet. Relieved to find that others also experience this.
I am also much more tired than I used to be. Put this down to being in my 60's and retired but reading posts on here it seems this is also common.
I don't know anyone else with this disorder and it does not really register with friends and family as an illness.
I know what you mean about becoming a "right old moan" but I have found reading the responses on here very reassuring so perhaps I might moan less having realised there are others in the same position.
janet,
Yes that is a problem communicating to others how you really feel, when there are no external signs. Describing how we feel is difficult. Saying we feel just a 'bit off colour', 'feeling run down' could easily be used by a mailngerer to get out of work or some obligation. I have worried about it each time, thinking that the person must wonder if I am just pulling the wool over their eyes. Often times my condition worsens and so I am reassured in myself that I was right to cry off whatever I was going to do. Occasionaly I begin to feel better and then I am guilty!
Nigel