Prefibrotic Myelofibrosis and I hate Hydroxyurea (HU)

[Apple238]

Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage. I resisted He finally agreed to 3x a week. (I’m not happy with this doctor, he doesn’t listen to my concerns, doesn’t answer questions, and tells me to go home and not worry so much). Needless to say, I am seeking a new doctor, hopefully one with more experience with my situation. BTW. A month ago switched to 2x a week. On my own. Immediately my side effects almost vanished. Platelets have risen to 470. But won’t go back to HU. There has to be a middle ground somewhere. I’m 83 and feeling fine without the HU. PS I’m generally in very good health!

[Andrew8]

Yes, I'm male now 74, was diagnosed with ET in 2016 , put on Hydroxy but developed extreme fatigue after about 6 months, and developed AF, had another bmb, changed to MF , tried others meds, then put on Jakavi, which has been much better, although got shingles symptoms, and still have itch on left side of chest, but manage with Aloe Vera gel. Had Sepsis last year which didn't help, but MF seems stable at the, just try to keep going and be grateful to be still vertical.

[Apple238 in reply to Andrew8]

Thank you Andrew8. Good luck and sounds like you have the right attitude!

[2003UK Champion]

Sorry to hear that you are struggling so much with your medication and dosage and with your doctor. I hope you find another doctor soon as I am concerned about you changing your dosage yourself, even though you are feeling better. However I am not medically trained. Look after yourself.