We all respond differently to phlebotomies. Some tolerate them better than others. It can get tricky when combining phlebotomies with HU. One thing to consider is that you may be refractory to HU. You may do better on one of the interferons, either Pegays or Besremi. I definitely found the IFNs to be more effective and easier to tolerate than either HU or phlebotomies.

In the short term, you may not notice any significant reactions to phlebotomies. They can significantly reduce HCT in a short period of time. This is very important to protect from thrombosis with PV. The intent is to induce iron deficieny through the phlebotomies. The body needs iron to make RBCs. Less iron = less RBCs. While this intervention will reduce erythrocytosis, there are potential consequences. In the short-term it is common to experience reactive thrombocytosis. This is not necessarily a big deal providing that you know to expect it. In the long-term, there can be adverse effects from the phlebotomy-induced chronic iron deficiency. Note that "can" is not the same as "will." We always have to weigh the risks and benefits of any intervention.

I was on phlebotomies every three weeks for some time. I tolerated this OK for over a year, but the iron deficiency (without anemia) symptoms got worse over time. I experienced fatigue, difficulty concentrating, memory loss, alopecia, cold intolerance, and reactive thrombocytosis (PLT + 200K). This lead to my decision to start on the IFNs, Pegasys then Besremi. I achieved a complete hematologic response on low doses of the IFNs. My quality of life has improved significantly as my iron levels improved. In addition, my allele burden has reduced from 38% yo 9%. I am hopeful for a deep molecular remission.

You may well find that you will benefit from and tolerate the phlebotomies. If nt, there are other options to pursue. It sounds like HU may not be the most effective treatment option for you. Fortunately, you do have other options if HU + phlebotomies will not work for you.

All the best moving forward.

Thank you, Steve, for that information and those resources.

My presenting issues in 2001 were pulmonary embolisms and a very high platelet level, then I was diagnosed with ET.

The hydrea has been very effective in controlling the platelet level and, until recent months, with bringing down my hemoglobin & hematocrit which have risen to problematic levels a couple of times in the past few years. Tho never as high as they have been this summer,

My hematologist told me a few days ago that if my levels don’t come down he would add another medication, so I feel he is on top of things and is charting an appropriate course.

I will keep an MPN specialist in mind, tho,

I have had 11 phlebotomies over the past 8 months. I get very tired for at least a week after the procedure. Looking to enter a clinical trial program in January that hopefully will lead to no phlebotomies.

I was prescribed HU, aspirin, and phlebotomy every two weeks if my hemoglobin over 13. After about : mo both hematocrit and hemoglobin were down tp acceptable levels, but my platelets increased possibly in responce to blood loss. I also had some increased heart rhythm issues seemingly associated with the reduced immediate blood volume reductions resulting from the frequent phlebotomy. Had a couple TIA and tachycardia issues . Cardiologist specifically suggested that the frequent phlebotomy may have been a part of that. I’ve a history of chronic PVCs with racing heart that did become far worse while on HU with frequent phlebotomy.

Don’t read in for yourself as we all respond differently to both the disease and treatment. My response here is simply information … keep watch on yourself

As I said previously to another person, check into the trial of rusfertide to bring down iron levels to restrict red blood cell production. I have pv and was having phlebotomy every two to three weeks. I now have been seven weeks without my numbers going up and no noticeable side effects. Your situation is different, but this still might help. I agree with Steve, always good to get several opinions. Lots of success in going forward.