PV venesection cycles, how often& how much?

[johoho]

Hi all, im interested to hear from other PV ladies and gents about the frequency of venesections. In particular those who are only on aspirin currently. Mine is around 8 weeks but my symptoms worsen for about a week leading up to a venesection. Then they take just over a pint. My hospital standard for a vensection is a count of 45 but i feel at my best at about 42/43. I wonder if anyone takes a different approach i.e. smaller venesections more often?

[Kari1961]

Hi Jo

Happy new year!

Mine is currently every 8 weeks and a pint at every venesection. As with you I feel at my best when it's 42 or even under. I've just had a look at the spreadsheet I keep and I felt fantastic when it was as low as 39!

I tend to get symptoms, itching, headaches, breathless, flu like feeling and fatigue when it's at 43, but they won't do a venesection until it's over 45. So I'd say that I feel pretty rough for nearly 4 weeks before it's due.

They are currently looking into the fact that something else may be causing the symptoms as my Dr doesn't think I should have them when my Hct is under 45.

So more hospital visits, scans and tests are coming my way. Oh deep joy!

K. x

[johoho in reply to Kari1961]

Hi Kari, lovely to hear from you & a happy new year to you too! Isnt that interesting about feeling good at such low levels? Im sure I read somewhere that there are some hospitals whose standard is 42 for women and 45 for men. Just out of interest Kari, do you have blood counts done part way through your cycle regularly? Is that how you have a record of the lower counts? Xx

[Kari1961 in reply to johoho]

I do Jo, I have bloods taken every 4 weeks. The 39 Hct count was in April 2015. Prior to that I'd had venesection in Feb when it was (0.473) and March at (0.455) I think the March treatment was the reason it dropped to 0.39

Saying that though I haven't had a blood test since 19th October, when it was 0.438 and didn't need venesection. My next clinic appointment isn't until the 18th Jan so it looks like they are going to let me go longer between blood tests. xx

[Aime]

Hi Jo, my venesections were approximately twice a week at the beginning in 2012 and then the time between got longer. Last November the nurse misread the results of a blood test and took off blood when she shouldn't have and I needed iron to recover from this. Since then I have not had any more venesections, my hct sitting at .44 which I don't feel particularly good on but they won't take off the pint unless it is at .45.

I am on blood pressure meds but recently my bp has been high so just waiting to get that sorted out, my hct is still just ok. I can't say I have ever had a pattern developing for the length of time between venesections.

Hope this helps, kind regards Aime xx😺

[Aime]

Hi Jo, sorry meant to say I have the fatigue, itchy skin, joint pain and sweats no matter what my hct is. There was a study done, if you go onto the MPN website I think there is a link to it( if not Maz will correct me and tell you how to get to it) but it showed that people can suffer these symptoms without blood levels being high.

Kind regards

Aime xx😺

[Mazcd Partner MPNVoice in reply to Aime]

I think this might be the study you are referring to Aime onlinelibrary.wiley.com/doi... Maz

[Aime in reply to Mazcd]

Thank you Maz, you have come to my rescue. Best wishes Aime xx😺

[karteeka]

hi jo and all, i havehad prv for 6 yrs and had a severe reaction to hydrox, so its managed on asprin and venasections alone at present- ive just had my 66th 400ml siphoned off and as a nurse im distressed to see the blood go in the bin as other than the plasma the rest is not suitable for transfusions. i have a full blood count monthly and my haem aims to keep the hb <155, pcv <460 . if they are above that he phones me and i have another bleed. i dont get sympyomatic other than chronically tired as my ferritin ie iron content of my blood is about 6 - normal is > 13. i work 3 days a week but live with it as there are many far worse. cheers jo-ann