found out 3 months ago i had Rubra Vera

1. John Lace 3 April 2008 at 23:45PM
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   Hi to anyone reading this, its 4th april 2008 and i found out 3 months ago i have Rubra Vera, i had in a two month period 16 pints of blood removed to get my blood thickness at a level the Docs were happy with. As when i was admited to hospital i had a red count of 23.9 and platelet level of 680, also my percentage was 64%. This all seemed gobble de gook at first but now i am starting to understand what is being told to me, i know there is no cure for it and things at the moment are not too good but i am sure things will get better. The hospital staff at Arrow Park in the Wirral have been fantastic with me and get great comfort from having good people to help.Some of my other symptons have been severe pains in my hands and feet as well as headaches, also very tired all the time.There has been a recent bad turn last week were i hjad a mini stoke [ TIA ] and i am due a scan next week....as i said things will get better !!!!!. My partner has been a great suport and is always very positive on the out come. I have been told it is a rare condition but not sure how rare, is there anyone out there in the UK that can tell me what its like as time goes on....i would love to here from you.

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2. Guest 5 April 2008 at 21:21PM

   Hi John, I was diagnose in June 2007 with Primary Polycythemia Rubra Vera and yes we are \"Rare\" - so enjoy!!!!!!!!!!!!!!. Go to site - mpd-support - Guys and St Thomas - Ann Marie Jahn. Excellent site explains everything and also send you a regular magazine update on all myeloproliferative happenings. Since being diagnosed I have been on a course of Hydrea - 500mg per day - and have venesection every month. Last month was the first time since a year last January that my levels were normal. I still get really tired but I maintain full-time work and walk for miles -I'm not giving into it. Good luck with the scan hope to hear from you.

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3. Guest 22 July 2008 at 19:48PM

   I was just diagnosed middle of May. It appears that 1.5 people per 100,000 get the disease (dunno how you get half a person). I started at 69% but it took only 10 bloodlettings to get to normal readings. Although it is not hereditary, my sister has had the disease for nearly 2 years (lucky old us). According to papers I have read life expectancy with treatment is almost normal (bit worried about the 'almost'. Anyway apart from being a regular unwilling blood donor there doesnt seem to be too much to worry about so go out and enjoy life.

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