Polycythemia vera Venesections: I was diagnosed... - MPN Voice

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Polycythemia vera Venesections

MrsCPP profile image
10 Replies

I was diagnosed with polycythemia vera 7 weeks ago. Currently taking Hydroxyurea and weekly venesections. Today 2 nurses tried 4 times to get the needle in a vein in both arms without success. This has happened 3 times over the last 7 weeks. The veins in the left arm and wrist collapsed. It was quite painful is there an alternative to venesections. Oncologist and Haemotolgist based in Hull but venesections carried out at a local hospital. Thank you

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MrsCPP
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10 Replies
hunter5582 profile image
hunter5582

There are alternatives to hydroxyurea + venesection. They include Jakafi and Besremi (or Pegasys). I achieved better control of the erythrocytosis with the interferons than I did with hydroxyurea. There is also a medication in clinical trial called rusfertide that is an alternative to venesections.

It is important to note that we all respond differently to the medications used to treat MPNs. While I responded much better to the interferons, not everyone does. The IFNs also typically take longer to achieve goal than hydroxyurea or venesections.

Suggest that you consult with a MPN Specialist about your situation. It sounds like you will not be able to include venesections as part of your treatment plan. You will need expert input from a doctor with MPN expertise. Here is a list just in case you are not already seeing a MPN expert doctor. . mpnforum.com/tsr-the-list/

Wishing you success moving forward.

MrsCPP profile image
MrsCPP in reply tohunter5582

Thank you for your reply looks like the closest one to me is Sheffield. I have tolerated the Hydroxycarbamide with no side effects so far. Just the venesections are proving to be the problem

lizzziep profile image
lizzziep

I’ve got “awkward” veins! The ones in my arm are, apparently, very deep and the ones in my hands wriggle about and collapse which makes taking blood difficult. The staff at the phlebotomy centre I go to to have blood taken regularly have got finding a good one in my hands down to a fine art, however the girls at my GP’s really struggle to get any from anywhere and always say it must be me that’s dehydrated - it’s not! Might be a Hull thing - my mother came from there!

MrsCPP profile image
MrsCPP in reply tolizzziep

Prior to venesections I drink at least 2 litres of fluid. They even used the vein scanner yesterday and always inflate the blood pressure monitor and keep it on while doing the venesections. I'm actually not far of with my haemotcrit numbers currently at 0.471 ideally need to be at 0.450 but not had one done now for 3 weeks now. Back to Hull on the 5th September to see the haematologist left a message for my Mcmillan nurse to call me, but hoping to see my GP on Tuesday. Thank you for taking the time to reply

ainslie profile image
ainslie in reply toMrsCPP

Looks like you have a good team there, it seems you have to do but too much water means venisecting effectively some water but better than no venisection.

I find soaking veins in hot water and bicep curls help

MrsCPP profile image
MrsCPP in reply toainslie

My sister whose a nurse told me on route to the hospital put a hot water bottle on my arm and take a pain killer an hour before. Which I have done every week. Unfortunately nothing is helping at this stage.

Jamesxyz profile image
Jamesxyz

Hi,

Thatis an archaic procedure.

How high is your HCT?

In time the Hydrea may bring it down.

Good luck.

MrsCPP profile image
MrsCPP in reply toJamesxyz

Currently at 0. 471 but not had a venesection for 2 weeks now when I started 7 weeks ago it was 0.650. Thank you for your reply

Jamesxyz profile image
Jamesxyz

Not too bad, I would think Hydrea could bring it down.

Ask your Dr.

Best

MCW22 profile image
MCW22

Maybe ask about going on ruxolitinib. I never needed venesections once I started on it

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