I was diagnosed nearly 8 years ago with PV and apart from awful fatigue, headaches, some blurred vision occasional itching,night sweats and restless achy legs, i'm not too bad!!
I am treated with blood letting a couple of times a year when my heam is to high, etc.
My consultant would like me to start on meds but I don't feel ready. Has anyone else gone this long without? I am 45, don't know if this makes a difference? Thanks in advance.
Melanie
hi harleydavidson, i have been managed for several years on initially weekly now monthly and if all is ok 2nd monthly venesection. i suffer similar symptoms to you and following a long discussion with my haem have decided to continue this regime, as i can manage it ok especially the fatigue which comes from low feretin levels.this is, rather than introducing a medication which i may react to. i also take daily asprin and my diet is also a factor- no red meat. cheers karteeka
Hi, I am just on clopidogrel and venesections about twice per year, which seems to work well for me at the moment. I am 58. Long may it continue x
I have been on venisections for PV 2 years and they control my counts fine. I get 150-175ml off every 4 weeks as I could not tolerate the larger venisections. I too have itch and I control that with UVB light. Its quite a decision to start meds or not. I just started Pegasys yesterday because for some it can slow or stop the disease as well as control the counts. Venisectiosn will control counts for some but does nothing to slow potential progression of the disease. HU for some will control the counts easuly and quickly but will not slow any potential progression and there are the risks such as skin cancer and some say leukemic etc. Best do lots of research before starting meds. I have done the research and have lots of papers which I would be glad to e-mail you if you can get me your e-mail address, I dont know if thats possible on this forum. I have had to pay for the Pegasy because I have not failed on HU or regular Interferon. Some have managed to get it on the NHS
Thank you all for your replies.
I have down loaded lots of info on the pros and cons and side effects. I still have 3 weeks before my next appointment with my consultant, so i will keep researching.
Stay well
Melanie x
Does anyone else take warfarin
I have PV with no symptoms
Have I progressed to PV?
Is anyone with PV on interferon?
Newly diagnosed and taking aspirin
