I have been on HU since 2017…..1500 mg daily the last 4 years. My last bone marrow biopsy a year ago showed vast improvement. Yes, I have more so-so days than great ones, but at 79, I can live with it. I have blood work every 3 months and have a fantastic hematologist. I guess my biggest complaint is occasional brain fog and chronic fatigue. I’m just thankful I can function as well as I do.

Hydroxyurea compromised my intestinal endothelium, resulting in chronic constipation. It also caused really bad oral ulcers, raw bleeding wounds as large as 1 inch across. I saw a return of canker sores and had a case of thrush. The HU also damaged the surface of my tongue, turning it as white as a snowbank (leukoplakia).

In addition, I have an additional non-driver mutation (NF1) that increases my risk of progression to AML. I experienced a significant spike in my JAK2 allele burden, from 26% to 38% in just one year prior to starting on the interferons. I tried phlebotomy-only for a while, but the phlebotomy-induced iron deficiency (without anemia) symptoms were worse than the PV symptoms (decreased energy, memory, concentration and cold intolerance).

My quality of life improved significantly on the interferons, Pegasys then Besremi. I feel better now than I did 10 years ago. I am maintaining a hematologic response and my allele burden has dropped from 38% to 10%. I am very pleased with my response to Besremi. Side effects have been minimal, itching/occasional rashes that are controlled with Zyrtec, elevation in LFTs which is controlled with milk thistle extract, and mild leukopenia/borderline neutropenia. The decrease in the leukocytes is a dose limiting factor to me and I am maxed out at 175mcg, which is OK since it is all that I need.

Wishing you all the best.

Generic HU only comes in 500mg doses. The brand name Siklos comes in 100mg. Brand name Droxia comes in 200-300-400mg. Note that all use of HU for treating MPNs is considered off-label since there is no FDA approved indication for using HU for MPNs. HU is, however, in common use, including all the various brand name iteration of this drug.

Yes.. my red platelets are 280 but white platelets dropping.. so hematologist gave me a choice of weekdays on and weekends off.. or every second day… ( 500 mg)..I thought every second day was more logical for the body…the challenge is to remember., so I have set an alarm( Alexa) for every day at 6 pm… and I check my calendar to see if it’s a pill day!.. I go for my first blood text next week.. that will be four weeks in this..so we will see .

I take 500mg on odd days and 1000mg on even days but my platelet count is still high, so that may change. I was diagnosed with ET in Dec 2022, and it's been trial and error ever since, with the dosage slowly creeping up.