PV and abnormal low protein in blood

[Edinburgh1953]

I have had PV for 4 years and take Hydroxycarbamide two 500mg daily. Recently posted about sensations in feet and legs and received replies which I was thankful for as some have reported similar symptoms.

Things have moved on since then and after recent blood tests have been told by consultant Haematologist that I have abnormal low protein in blood which maybe caused but he’s not sure by the Hydroxycarbamide.

Have any other people in PV community had the same diagnosis as it giving me a slight feeling of apprehension of what’s ahead for me. I am awaiting a letter for face to face appointment to discuss the abnormality and what’s to be done but given the NHS Scotland backlog as in other parts of UK that might be weeks away.

Any feedback will be greatly appreciated.

Thank you

[hunter5582]

Sorry to hear about the additional concerns. I suppose it is possible that the HU could be causing the issue with low protein in the blood since it can effect kidney and liver function, That is far from certain, but it expect it is on the list to consider. The good news is that there are other options if HU is the problem. I was not able to tolerate HU and phlebotomy-only caused its own issues in treating PV, I am doing much better on Pegasys. So far it has been all benefit and no adverse effects.

We are each different in how we respond the the treatment options for MPNs. MPN care needs to be individualized based on the needs and preferences of the person. That is why it is so important to see a MPN Specialist. Many hematologists do not have the KSAs to provide optimal treatment for MPNs. There is at least one MPN Specialist in Edinburgh with whom you could consult. Here is a list. mpnforum.com/list-hem./

All the best to you, please let us know how things turn out.

[Bluetop]

I have been diagnosed with PV for 5 years. I started hydroxy within the first few weeks of diagnosis and at first this did coincide with a fall in my protein. However it settled down and for the past 3 years protein has been in the normal range, but low. My albumin is nearly always just below the normal range. (I do not have phlebotomies). I hope you get to the bottom of the problem quickly. Keep us posted.