Polycythaemia Rubra Vera

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.

Hello Nigel

Thanks for reply. I am really glad I found this site, as I say, nice to hear from others in same situation. I worry a lot about the disorder, it seems a fine balance to keep things on an even keel. Started having panic attacks, doctor gave me Diazepam. Not like me at all. Don't think I am very good at being ill!!!

Best Regards

Janet

Hi Christabel999 I just have to wonder at the sore toes and feet. That was one of my problems before being diagnosed. I also found out I had gout and also rheumatoid Arthritis. The sore toes had to do with gout, and since being given allopurinol for gout, my toes no longer hurt. I get ulcers in the mouth, only if I eat too many tomatoes, or chew juicy fruit gum, or eat soy products. I use orabase gel for mouth sores. Hope that helps.

Harris 

Hello christen,

I have been suffering from primary polycthemia from birth, it was for a long time put down to alcohol, so to prove my point I stopped drinking and since then I seem to feel worse or maybe it's the drug hydrea I have to take. I concur with everything u say. My every ailment is exaggerated because of this disease. I would almost mark the days on the calender when I feel I could climb a mountain so rare as they are. My doctors are very understanding of my condition (as it was they who were suspicious I suffered from this horrible ailment. I researched it to find that this condition is extremely rare and that I am 1 of maybe 3 or 4 people in Ireland who has the genic for of this disease. I could never hold down a job I a great lot of the time because of the amount of time I would feel unwell for one reason or another. At the minute I am now on around 15 different drugs such is the effect the illness has on me. Lately I was put on cetirzine because of the itching that has been driving me mad lately. Your not a hypochondriac nor are you mad or exaggerating your condition. My heart goes out to you because it's difficult as I found out , that people can be negative to wards you. My advice is, along with this text any and all information you can print out. Hand the information you have to friends and family who are not sympathetic to wards you. It is real and it is debilitating. I don't normally bother with these kinds of sites, so when i can across you post i just felt i had to give you an answer. Take care and be positive if you can. Clem

Hi Christabe. I don't know why you are only on one a day of Hydrea. I take Hydroxyurea, probably same thing as you. My hematologist experimented by giving me two a day, then one a day. Now, he found the right mix. I take one a day, except two days a week when I take one in AM and another in PM. It works great, I feel good most of the time. I admit I also have arthritis, so do have pains here and there, but still walk at least 40 mins each day. Then work out at curves mosty days. Then also weed an hour or two some days. I do often take a nap in afternoon. But, since the Hydroxy has my blood count under control, I no longer need the venesections. Hope your doctor eventually does this for you also.

Best of luck, harrishill

Christabel it might help to take your hydra tabs by pushing it from the foil into a glass of water and swallowing them over. This method has worked for me. I hope this helps. I am into my 4th year and stumbled onto the forum.

Hello from a fellow ascot living in Australia,

I also have PVR.

I was diagnosed over a year ago and take Hydrea and have regular venesections.

I get very tired and have very painful red gums and lips.

Two months ago I was prescribed iron tablets for my tiredness....I have been feeling unwell ever since. I was thinking that surely iron couldn't be good for a patient who makes too many red blood cells and asked my chemist. he looked this up and agreed with me telling me to contact my haematologist which I did. he has now ordered extra venesections to try to minimise any damage that this stupid GP might have caused.

The moral of this story is...know your own body and don't be afraid to question what the doctor says.

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