PV treatment has lowered my HCT to 29

[Flynn2107]

I have P Vera with Jak2 burden of 88%. I am on 500 mg of Hydroxyurea daily. I had four phlebotomies in March and another in mid April to lower my Rbc, Hct. My RBC started near 8 and is now down to 3.9, my HCT started at 58% and is now down to 29%. My Dr took me off Hydroxyurea until my numbers improve. My blood test yesterday showed my numbers stayed the same (3.9,29%) after a week without HU. my Hgb is 9.6. It looks like my treatment lowered my numbers more than intended and now my numbers are not improving yet. Anyone else have this happen??

[hunter5582]

Happened to me too. My HCT got down to 32%. The doc said "We over-phlebotomized you." I took an iron supplement for a couple weeks as this happened prior to a major surgery. I decided to discontinue the iron supplement since it had unpleasant side effects. I elected to just eat a more iron rich diet and let my body recover on its own. It took 14 months before my HCT got back up to 44%.

I am now quite iron deficient, but HCT is at an acceptable level. Unfortunately the iron deficiency is causing problems, including driving the thrombocytosis is by about 200K. I am meeting with the MPN Specialist tomorrow to discuss a change in tx plan. Will be considering PEG-IFN and RUX rather than phlebotomy-only. We will see what happens.

[Flynn2107 in reply to hunter5582]

Thank you for the reply, it helps to know I' m not the only one.

[Aime]

Hi, yes has happened to me also. I’ve asked for a second opinion as my nhs haematologist does not recommend iron but the one I saw privately does. So my GP is sorting out!

Kind regards

Aimex😻

[Flynn2107 in reply to Aime]

Thanks for the reply, hope we can get our numbers to a healthy level, good luck to to us all.

[Flynn2107 in reply to Aime]

My Dr had me stop the 500 mg hydroxyurea I was taking, don't take an iron supplement, but its alright to eat more high iron foods.

[Aime in reply to Flynn2107]

Double check with haematologist but I was told to eat a normal healthy diet but I do eat extra iron rich foods also but it’s made no difference. X😻

[neela2020]

Yes same with me, on and off of HU , counts doesn't stay same for long. In my case it is adjustment of all three cells, which I didn't hear from any.