Still feeling tired after 3 venesections.

You will just have to deal with the lack of iron, taking any iron supplement would be dsngerous to your health, i get very lathargic myself a lot of the time. As for the dizzy spells , i take 3 prochloperazine tablets a day another drug called stemitil works as well.

Everyones' body has a different reaction to the same disease. It is a known fact

that when someone has a venesection (phlebotomy in America) the lost of blood

also means the lost of iron which is the backbone of energy..  i am a senior and PV is my 3rd cancer.  I am remission of the other two.  The doctos/specialist will insist that you take iron supplements and until I decided it was becoming a catch 22..

take the iron to replace that what one lost during a blood draw caused me to have continual blood draw.  HCT is the guide the lab uses to see if you need a blood draw...depending on the target number your doctor selects. ...so it was my own decision to cut out any source of iron e.g. pills, red meats, kale, spinach etc. and My HCT has

come down and stayed down.(no blood draws)....it may also be mind over matter. If you sit and think about it... you go no wherer...get out and walk and drink plenty of water..It is almost like being on the edge of the desert that one must cross ... so it is mind over matter.  I admit on occasion I do take a 45mg slow release iron and that is usually one a month.  As I stated I am in my senior yrs. 80 plus. I live alone and do all my own chores in the house and out.

Good luck!!

Hello Suki

It takes a little time to feel the benefits. You have only had 3 venesections so far. Also be aware that the more venesections you have, the more your ferritin levels (iron) will drop. This will compound your fatigue but as the weeks and months go by you will not need as many venesections and as a result, your iron levels will start to improve again. Polycythaemia affects people in different ways and whilst you will feel better in the long run, you may not eradicate the fatigue completely. I, like Clem, still get very tired but I am in much better shape than I was when first diagnosed with PRV. Another thing is that you may (but you may not) experience other symptoms when first starting the venesection programme. For example with me, I always suffered from migraines with aura but shortly after I began an intense venesection programme, which was every other day for nearly a month, I was getting these migraines every day and it was really getting me down. The venesections then became weekly, then fortnightly and now I am down to once a month. I have not had a headache let alone a migraine in over 3 months now!!  So as mentioned, you will feel the improvements over time. I notice from this forum that many Haematologists do not prescribe iron supplements, including mine. Whilst iron tablets might improve your ferritin levels, it also increases your red blood cell production, which is what you are trying to avoid.  I take zinc to improve my immune system and co-enzyme Q10, which improves your brain function. I live in the UK so these products will probably be called something different in other countries. Some people in this forum avoid food high in iron such as red meat but I (personal choice) don’t. I don’t eat red meat every day but do have it on average once a week. I would suggest you speak to your Haematologist about iron supplements before taking any. GP’s/Family Physician’s as this forum has demonstrated on many occasions simply don’t have much understanding of our condition. As Clem has said, taking them especially without consulting your Haematologist, could have an adverse effect on your health.

Hope this helps and hang in there, things will get better.

Keith

Hello Suki

It takes a little time to feel the benefits. You have only had 3 venesections so far. Also be aware that the more venesections you have, the more your ferritin levels (iron) will drop. This will compound your fatigue but as the weeks and months go by you will not need as many venesections and as a result, your iron levels will start to improve again. Polycythaemia affects people in different ways and whilst you will feel better in the long run, you may not eradicate the fatigue completely. I, like Clem, still get very tired but I am in much better shape than I was when first diagnosed with PRV. Another thing is that you may (but you may not) experience other symptoms when first starting the venesection programme. For example with me, I always suffered from migraines with aura but shortly after I began an intense venesection programme, which was every other day for nearly a month, I was getting these migraines every day and it was really getting me down. The venesections then became weekly, then fortnightly and now I am down to once a month. I have not had a headache let alone a migraine in over 3 months now!!  So as mentioned, you will feel the improvements over time. I notice from this forum that many Haematologists do not prescribe iron supplements, including mine. Whilst iron tablets might improve your ferritin levels, it also increases your red blood cell production, which is what you are trying to avoid.  I take zinc to improve my immune system and co-enzyme Q10, which improves your brain function. I live in the UK so these products will probably be called something different in other countries. Some people in this forum avoid food high in iron such as red meat but I (personal choice) don’t. I don’t eat red meat every day but do have it on average once a week. I would suggest you speak to your Haematologist about iron supplements before taking any. GP’s/Family Physician’s as this forum has demonstrated on many occasions simply don’t have much understanding of our condition. As Clem has said, taking them especially without consulting your Haematologist, could have an adverse effect on your health.

Hope this helps and hang in there, things will get better.

Keith

I have the dizzy spells myself alot. I also have a kind of a heavy feeling? in my head. Im not sure how to describe it. Not a headache but something. I am also tired alot, so your not alone here really. I hope you find some help, this place is amazing for that. So far for the dizzy spells, drinking alot of water and a hot shower, sounds crazy I know, has helped me out a bit.