Thanks again Steve, your feedback is once again appreciated. I’m still doing well after 6months of phlebotomies + aspirin. My ferritin level is very low but not feeling any significant hardships from anemia. My burden is also 38 but luckily do not have any sub mutations. Hoping for more feedback to better decide if I need to start cytoreduction.
Thanks, glad to read you are doing well.

My variant allele frequency has reduced from 38% to 10% in 2.5 years on the interferons at a low dose. This is significant in this being a biomarker we are using to assess MPN status. Note that I am at increased risk for progression due to having a non-driver mutation, NF1.

I currently take 175mcg Besremi every other week. This is the maximum dose I can take due to the reduction in WBCs, mild lymphopenia and borderline neutropenia. We have set the parameters of LYMPH>0.50 and NEUT>1.00. I can't go any higher and do need a phlebotomy about 1x/year to maintain HCT<45%.

Other side effects have been minimal. I have experienced itching and occasional rashes. This is well controlled with a daily dose of cetirizine. I also experienced elevation in LFTs 3x/ULN. On the advice of my Integrative Medicine doctor I started on a daily dose of milk thistle extract which returned the LFTs to an acceptable level.

My primary treatment goal is preservation of quality of life. My quality of life has improved significantly since starting on the IFNs. I was intolerant and refractory to HU. The side effects of long-term iron deficiency induced by phlebotomies were worse than the PV symptoms. I feel better now than when using HU or phlebotomies. In fact, I feel better now than I did 10 years ago.

We are all different in how we respond to the medications used to treat MPNs. My response does not predict yours. What I would note is that the IFNs can be very effective for many of us and have the potential to be disease modifying.

Wishing you all the best as you move forward.