Sorry to hear you have a contraindication for Besremi and experience significant adverse effects to both Jakafi and HU. The answer to your question will need more than a little nuance and an individualized care plan in consultation with a MPN Specialist. There are some things to consider and review with an MPN-expert doctor.

There is no linear increase in risk associated with platelet levels in PV. The risk is directly related to erythrocytosis, with the target being CHT<45% to reduce risk. Suggest asking about ignoring the platelet levels (unless they are so high to be a risk for hemorrhage) and focussing solely on the erythrocytosis.

The dermal adverse effects you report are a significant concern. It is particularly important to monitor for dermal ulcers. These are a very serious adverse effect that is an absolute indication for HU intolerance and discontinuation. If there are no ulcers, you may be able to pursue an aggressive dermal treatment regimen to manage this adverse effect.

You did not mention whether the leukocytes are high or low. Suggest reviewing this with the MPN Specialist regarding the potential impact of leukocytosis if present and monitoring for leukopenia as a treatment adverse effect.

There is another option that was recently FDA approved for PV. Rusfertide (Mimrylo) is a hepcidin mimetic that reduces erythrocytosis by altering iron metabolism (keeping iron in storage). It replaces the need for phlebotomies, which are intended to make you iron deficient. Unfortunately, sever iron deficiency can also have significant adverse effects, which is what happened to me. Rusfertide is a very promising option for helping to manage PV. Suggest you review this option with a MPN Specialist. Note that it is a brand new drug and will likely not be on your insurance plan formulary yet.

Rusfertide works in a very different way than the other pV treatment meds and may be a good option for you. Suggest a prompt consultation with a MPN Specia.ist to review your options.

Wishing you success moving forward.

Thank you Steve for all the great feedback. Have no open sores; just intense itching and burning skin. Great news. I was approved for Rusfertide Injections. Received my first monthly kit on Friday from RMCC here in Colorado. Meet with Oncology PA on 9/28 to do labs/ phlebotomy if necessary, and whether we are continuing hydroxyurea. Also, will find out if we start Rusfertide Injections that day. This medication shows great promise for all of us having weekly phlebotomy. Will send you an update. Thank you so much for taking the time to respond. Been feeling anxious and along. Have a wonderful Sunday. Sadie