Anyone want to talk about Myelofibrosis?

I was treated for high platelets for years,About three years I was diagnosed with myelofibroma by my hematologist and started taking Jakafi to decrease the fibrosis.My condition has been stable over these many months, but have a low RBC and Hemoglobin reading. As a result, my leg weakness has been constant and my endurance has decreased.I'm curious re. the effects with other patients.Look forward to continuous discussions.

Thanks for reply. I, too, am on Jakafi and have been treated for condition for about 3 years. My basic side effects are decrease in RBC production and a low Hemoglobin, causing chronic leg weakness. Otherwise, stable.Are other meds related to myelofibrosis ?

I was diagnosed with myelofibrosis about 4 1/2 years ago. I formerly was diagnosed with essential thrombocytosis which I had for about 10 years . I am considered "stable " currently, and am at a moderate level of myelofibrosis . 4 1/2 years ago my medication was thus changed .

Hi @wellness3070. I'd also like to introduce you to other members who have myelofibrosis or are caring for a family member who does. @rcand10s @gael and @bjsdancer will you join us in welcoming our newest member?

Wellness, I echo Teresa's question. When were you diagnosed? Are you in treatment?

Hello @wellness3070 and thanks for beginning this conversation. Please share with us your interest in this disorder. Is this a recent diagnosis for you? We look forward to getting to know you better and having others share with you from their experiences as well.