I was diagnosed with ET 6 years ago (2016). My hematologist started me on 500 mg of hydroxy daily for 6 months and then increased my dose to 1000 mg daily since my platelets were not decreasing. We are still playing with dosage as my platelets are all over the place. My symptoms…which are many have escalated during the last few months which is frustrating. But one I have not read about and am experiencing is extreme neck and throat stiffness. It feels almost rigid. Has anyone else… read more
Hi sorry you’re experiencing this I never had that symptom. I started on hydroxuria for 1 year but I’ve been Jakafi for 3 years and I feel pretty good
Yes, I have neck, throat , shoulder stiffness as well, but I have RA also.
Yes I have pain and stiffness in my neck, shoulders and upper arms with tremors in my thumbs. But I also have rheumatoid arthritis. I was first put on Hydroxy but had horrible GI side effects, so now am on Methotrexate (mainly for arthritis) and Prednisone.