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
Polycythemia vera Venesections: I was diagnosed... - MPN Voice
Polycythemia vera Venesections
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.
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!
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
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
Hi,
Thatis an archaic procedure.
How high is your HCT?
In time the Hydrea may bring it down.
Good luck.
Maybe ask about going on ruxolitinib. I never needed venesections once I started on it