High platelet counts as with polycythemia Vera treatments

Does anyone have a doctor that allows high platelets as they are caused by the blood draws to control the HCT and the rest

[MPort]

Yes I was in this situation at the start of my PV experience 14 years ago. I understood that the platelet rise was the body's natural reaction to the losses of blood caused by venesections. My white count also rose to 30 if I remember rightly. Then the haematologist decided it was time to control the bone marrow over production by other means, ie hydrea or interferon.

It suited me very well to move on to medication even though it took a while to act and I had to have less frequent venesections. The rise in blood levels gave me headaches and the reddist face imaginable. The relief of the venesection was wonderful for a day and then I was weak and worn out.

So medication was the best option.

Mairead

[Loubprv Volunteer]

Golly. Not sure what you mean by that?

If you mean sometimes having a venesection causes platetls to rise, mine haven’t so far.

You really need to discuss this with your doctor.

Louise

[Hidden in reply to Loubprv]

Mine didn’t in the beginning but then they took off but now after 10 sessions they are coming back down but still high..I am happy the HCT finally came down under 45 as there were times of little to no progress

[hunter5582]

Yes. The MPN Specialist I see focusses on symptom management, not "sanitizing" blood cell numbers. PV treatment hinges on controlling HCT - keeping hematocrit below 45%. Many docs do not worry about platelet levels as an absolute in the absence of symptoms like thrombosis. Actually - for some of us (me included) our risk for hemorrhage goes up when our platelet levels rise. There is some pretty good evidence out there that it is actually leukocytosis or erythrocytosis in combination with thrombocytosis that is the greatest risk.

Increased platelet levels in response to venesection is pretty common as it is the body's normal response to bleeding. What has been more bothersome for me has been the significant anemia from the venesections. I was doing every three weeks until my doc called to say "we have been over-phlebotomizing you." All iron levels very low - ferritin so low they could not even measure it. Phlebotomies are on hold until iron levels come back up, which is OK since all of my erythrocytes are really depressed too.

So that is the long winded way of saying "yes" to platelet levels increasing. I have learned to not sweat these fluctuations. So long as I do not have any bothersome symptoms, I am not going to sweat whether my platelet levels are 500 or 700. That is the right approach for me based on my individual PV profile. Can't say whether that will work for someone else as we are each unique in what out needs are and which treatment approach is best.

[Hidden in reply to hunter5582]

My dr agrees with you now that my HCT is below 45...he is not all that concerned with platlets up to 700 or so

[hunter5582]

Glad to hear your doc is on-board with that approach. This is a link to a recent interview with the doc who is the MPN Specialist with whom I consult. mpnforum.com/spivak-how-i-t... . Certainly many docs do not use this approach, but from my perspective - it is the right approach for me.

[mfh7]

After 5 years of phlebotomies my platelets slowly but steadily increased to 1500. My assumption has been that it was the phlebotomies in large part that contributed to this but was never clear on that. My doc at the time was primarily concerned with hct and said I could live with the high platelets but I wasn’t really comfortable with it because of bleed risks. I think it’s a balancing act on the labs with hematocrit and stroke risk being the primary concern but each case is different depending on age, risk factors and what the other lab results are telling you. Short answer is it’s common for platelets to increase dramatically from phlebotomies based on my experience. I am on Besremi now as of 6 weeks ago and platelets are moving rapidly towards a more normal range. The high platelets contributed to my decision to start meds at my current age rather than wait until the traditional age of 60 with the goal of eliminating the need for phlebotomy. Iron deficiency and quality of life also played a significant role in my decision. Time will tell regarding whether Besremi is a better option for me than the blood draws but so far I am glad I am giving it a try. Best of luck to you!