9 Venesections in 10 weeks

Hello Glenn,

It is early days for you I must say but as has already been pointed out it is a very inconsistent disorder and it does take some time to get the PV under medical control, which is essential.  So a visit to your hospital doctor or haematologist is needed to attain this as has been suggested.  The symptoms can vary from patient to patient and are often affected by the treatments recommended.  You'll need to undergo differing tests before you settle into a routine but it seems you already have the hospital facilities to hand.  There is currently no cure for this disorder which is caused by an over-production of red blood cells by the bone marrow.  However, it can be effectively treated and this is why it needs early attention by your medics.  Treatments generally vary from patient to patient, and are designed to treat each patient individually.  What is effective for one does not make it suitable for all.  There are a few booklets available from NHS hospitals dealing with PV and other MPN diseases to which group PV belongs which are very suitable for patients and can answer many questions that may arise.  You will gather that there are a number of existing sufferers on this forum who are well placed to use their experiences and make life a little more welcoming for you.  Look after yourself as you can for PV is a very rare and serious disorder but very treatable.  I wish you well.

Peter.

Hi glenn76104.  We are told to take it easy after a venesection. Tingling could be a side effect of the venesection. However, don't worry too much about it. Eventually, your hematologist will probably put you on meds rather than the venesections. They don't like to continue with just venesections.I have been diagnosed for about nine yrs now, with PV. My hematologist has increased my meds and lowered them a few times. So far, I am still on Hydroxyurea. I live a normal life, and am doing well for 76 yrs old. Best of wishes, harrishill.