karteeka12 years ago

hi hollymae, i was diagnosed with pvr 4 yrs ago and following a reaction to hydrox have been maintained on venesection only. initially it was 400mls weekly, and now depending on my bloods which are checked 4 weekly, its either 4 weekly or if lucky, 8 weekly. i am happy with this management and my haem. although it is somewhat inconvenient said as long as the veins hold up this can continue indefinately. one thing that none has mentioned in their management of pvr is the importance of diet- no iron supplements/foods- no matter how tempting to get over the iron deficiency, nor vitamin c and plenty of fluids. cheers karteeka

harleydavidson12 years ago

Hi Hollymae, I was diagnosed with pv 7 years ago aged 38. I still only have venesections and take aspirin. My heam would like me to consider meds now but i'm still putting it off as I don't

feel ill, just tired all the time. Hope this helps. Mel

AlRow12 years ago

I have now been diagnosed with Polycythaemia Vera for 3 years. I was first of all started on low dose Asprin and regular Venusection weekly at first. However, I am also Asthmatic and the Asprin gave me some reaction. I was then prescribed Clopidogrel which seems to suit me fine. The Venusection was as I have said very frequent in the first couple of months following diagnosis. I then reduced down to 3 month appointments but only requiring Venusection alternate visits. I then had a period of nearly 18 months without the need for Venusection. I was obviously feeling very happy about that, then I went for my 3 month appointment earier this year and have since then have required Venusection every time.

dslater128912 years ago

Hi Hollymae

I was diagnosed with PV 5 years ago when I was 44. I began my treatment with low dose aspirin and a venesection every 3 months. Nearly 2 years ago I had a rather unpleasant reaction to the build up of aspirin - a gastrointestinal bleed, which made me very anaemic. I haven't taken the aspirin since and during that time, because of the anaemia, I didn't require a venesection. Of course, this wasn't to last and after a few months on iron tablets and careful monitoring, the anaemia settled down and I had my first venesection in nearly 2 years, last month. No doubt I will need to take something eventually to compensate for not taking the aspirin, but at the moment, I'm happy to carry on with just the venesection.

Hope that helps.

Debby