1,108 total results
Discussions (73)
Does anyone have information on PV with a low hemoglobin/ red count
A year and a half ago, I presented a hemoglobin of 7g with no evidence of bleeding in upper or lower GI as per scans....
Spleen involvement in ET
Hello, I am wondering what the symptoms are of beginning spleen involvement in ET. I was dx'd with ET in 2013 . My Internal Medicine...
Medicines for reducing fibrosis in polycythemia vera patients
I am a PV patient, currently age 50, JAK2 verified, producing a tremendous amount of red blood cells (started treatments at a 72% Htc). Besides...
Essential Thrombocythemia, anemia and Celiac Disease, the Trifecta
I learned I had ET through a routine blood test during my annual Medicare checkup last fall. Since then I have found I have the...
Is my treatment a bit aggressive?
Hello, I have just been diagnosed with MPN with JAK2 mutation and negative for the other BCR/ABL 1 mutations. Platelets are 639 on 4/22/24. Everything...
What might this be? polycythemia vera, PCOS, lupus, something else?
Polycythemia with all negative results???????? I am a 29 year old female and have been feeling not myself for almost 2 years now. Below I...
Are the symptoms in my head? Polycythemia Vera + Mastocytosis (age-23)
Hello, am I crazy? I'm a 23-year-old biological female with a complex medical history. I'm going to list my pre-existing conditions, before I started hematological...
VonJo (pacritinib) effects
Has anyone taken Vonjo (pacritinib) a JAK 2 Inhibitor? If so what were the effects and how long were you able to take the medication?...
Essential Thrombocythemia (ET) and viruses
I was diagnosed with Essential Thrombocythemia a few months ago, and I’m positive for JAK 2. So far, I have a “mild” case (platelets are...
Soft-Tissue Masses Not Diagnosed
We all know when we’re sick, right? Well, I’m sick, but I can’t get a diagnosis of my illness. My symptoms have been going on...
Lightheaded with ET
Hi everyone. I’m 70, diagnosed with ET in June, 2022, and JAK 2 positive. I’m only taking 2 low-dose aspirin a day because my platelets...
Sudden gross hematuria
I was diagnosed with MPN JAK-2 last year. Polycythemia Vera and/or essential thrombocytopenia Initially needed 2 phlebotomy’s and 2 Gm/day Hydroxyurea. Labs tanked so slowly...
What are pros of hydroxyurea vs other methods of lowering platelets?
I am 47 & received my official diagnose today. I am JAK 2 mutation only & after a bone marrow biopsy & further genetic testing...