My haematocrit seems to be creeping up on a regular basis.
Usually around 45 by which time my sleep tends to be disrupted and my gums bleed.
My haematologist seems loathe to recommend a venesection which is my choice rather than increased hydroxicarbamide - I take 10x500mg / week- he says it's dangerous although I seem to have little side effect from venesection - touch wood!
I prefer venesection rather than increased dose of hydroxicarbamide as it lowers my haematocrit to around 41/42 immmediately.
Would anyone like to comment please? Thanks.
Written by
LouisePRV
Volunteer
To view profiles and participate in discussions please or .
I'm in a similar situation but would probably choose to return to medication rather than venesection. My HCT is usually pretty stable but my last FBC result was 0.46 which I am not completely surprised about as I have been experiencing tinitus, heart palpitations and various other twinges.
What is the actual process of venesection like ? I have read in the past that it is not great for your bone marrow to have too many of them.
karteeka, hi etphone home. i am managed exclusively by venasection- 400 mls at a time- monthly or if lucky 8 weekly depending on my hb. mcv, hct. so far over 3 1/2 years i have had 45 - which equates to 18 litres blood- all from one vein. other than being chronically tired as my ferritin is about 8 (25-300= normal) im happy to continue with this- i dont know why your bonemarrow shouldnt like it- i suspect it likes hydrox less as its a chemo agent- to supress bone marrow activity. i am lucky being a nurse and my haematologist knows it and is pretty up front with me. like any procedure try it and if you dont like it try something else-
I live in the Lakes and have a wonderful clinic at the lovely (small) Westomorland General Hospital who are so obliging it's unbelievable.
I know pretty well all of the nurses by name now and go there every 4 weeks for a blood test. I see my haematologist every 8 weeks.
If I think my haematocrit is creeping up I phone them and book in for a blood test.
The sister liaises with my haematologist. He seems to prefer me not to have a venesection more than twice a year for some reason. He says it's dangerous though he won't say why. Unfortunately my haematologist is one of these doctors who seems to just want to treat me, and not say what or why he's doing it. I've had to dig pretty hard to find things out, and challenge him - which he doesn't like! He gets quite cross. However as I said last time - you're looking at the figures, I'm living in the body.
If you look on the mpdvoice.org.uk and scroll down to venesection it seems to say it's a pretty safe procedure.
I wish I could speak to another haematologist but there's only one ( very overworked ) one in this area.
Is it because venesections involve cost and it's easier just to prescribe medication I wonder?
The impression I got from listening to others about venesections was that they aren't encouraged unless essential as too many makes the bone marrow work hard and as a result can speed up disease progression.
I have had PV for 7 years and have survived solely on venesection (and Clopodogrel. ) Although I only have about 2 per year. My consultant explained that in some people taking blood makes the body think ' eek, someone as Taken my blood' and then it works harder to make up the depletion, therefore the venesection has been pointless. Luckily for me, this does not happen. I hope you feel better soon Louise. Your friend in Exeter. x
I have about 6 to 8 venesections a year and i take 12 HU tablets a week. The procedure is exactly the same as giving blood and if you are not squeamish and can put up with a fairly large needle shoved in your arm then its simple and i cannot see how its dangerous. What is dangerous is allowing the heamoacrit over 45.
my hct c46, just over the upper end of normal (=<45). I am on 14 hydroxy tablets per week.
the local junior haem asked me if i wanted more hydroxy or add on 4/6 weekly venesections. When i asked him what the trade-offs were, he said it made no difference! Another local junior haem told me that the official line was more drugs but if he were me he'd stick to a mix of drugs and venesection, which is what I am doing.
previously a haem told me that venesections produce more small platelets which are sticky and increase the risk of clotting and therefore stroke/Myocardial Infarction, but if your platelet count is low and/or you r on aspirin I am not sure if this is relevant.
I am guessing that the trade-offs of more hydroxy are increased side effects (if any) and possibly increased risk of leukemia in the medium/long term....on the other hand as I understand it there is some link between taking hydroxy and NOT getting myelofibrosis, as the hydroxy slows down the "scouring" of the bone marrow working overtime....but no idea if there is an "ideal" dosage level for this
isn't it a poor reflection on the state of care we get that there isn't a clear answer on this?
I have about two venesections a year at the moment, along with 10HU tablets per week.
I agree with Jane, it would be great if we could all have a direct line to an expert in MPD's.
I certainly know more about all this than my GP and sometimes wonder if my haematologist really knows what's going on!
He's great at keeping the figures in check ( the most important aspect I guess) but seems totally unaware of what it's like living with it on a day to day basis!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
ET CALR+ & Venesection?
Rising haematocrit levels
Treatment options
Haematocrit for those with PV
Got my iron results
