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Discussions (44)
Is it okay to take B12 with essential thrombocythemia (ET)?
I have ET and JAK2 mutation. Is it ok to take B12 for the tingling in my feet?
Last active: Apr 8 11:11pm
Essential thrombocythemia (ET): When to start hydroxyurea (HU)?
I was just diagnosed with ET. I am 61 years old. My platelet count is 640k right now.Doctor suggested I take a baby aspirin everyday...
Last active: Jun 7 6:24am
A link between Rheumatoid Arthritis and Essential Thrombocythemia?
Does anyone know if there is a link between Rheumatoid Arthritis and ET? Is one more prone to RA with a JAK2 mutation?
Last active: Feb 9, 2024
Essential Thrombocythemia JAK2 symptoms of dizziness/vision distortion
Hello, I am newly diagnosed (2 weeks) with Essential Thrombocythemia JAK2 and have been on 1000mg a day of Hydroxyurea for 2 weeks. I have...
Last active: Apr 23 9:18am
Type 1 diabetes and essential thrombocythemia: Anyone have both?
Hi, I am newly dx with ET on HU. I also have type one diabetes and on an insulin pump. To manage type one I...
Last active: Jul 29, 2024
JAK2 V617F Essential Thrombocythemia: Hydroxyurea causes headaches
On routine annual labwork in December of 2022, platelets were elevated (over 600 X1000/UL). At referral appointment with a hematologist in January 2023, platelets were...
Last active: Jul 17, 2023
Tiny veins appearing while taking HU for Essential Thrombocythemia
I have been on HU for Essential Thrombocythemia since the first part of November with good results. My platelets have fallen from the mid 600s...
Last active: Feb 2 9:03pm
Essential thrombocythemia (ET) and breaking out in hives: What helps?
I was diagnosed with ET 2 1/2 years ago. I am on 500mg of Hydroxyuria a day and 1/2 a baby aspirin, and that keeps...
Last active: Feb 28, 2023
Any correlation between Essential Thrombocythemia & high B12?
I was diagnosed with Essential Thrombocythemia in December 2022. My platelets have been kept under control with 500 mgs of Hydroxyurea 3 x a week....
Last active: Jul 30, 2025
Does anyone else have more than one myeloproliferative disorder?
Hello. I am new to this group and looking to connect with fellow members who are dealing with MPD. I have Essential Thrombocythemia as well...
Last active: Dec 19, 2022
Could erythritol be adding to my platelet count?
I have essential thrombocythemia. I use liquid coffee creamer that contains erythritol. Could this be increasing my platelet count?
Last active: Mar 2, 2023
Has anyone been on BESREMI (Interferon)?
I was diagnosed with Essential Thrombocythemia w/JAK2 4 years ago. My platelets continue to climb and I’ve been on Eliquis and baby aspirin for over...
Last active: Aug 5 1:10pm
Myeloproliferative neoplasm Anyone else have a similar diagnoses?
Bone marrow consistent with a myeloproliferative neoplasm and the differential includes essential thrombocythemia and primary myelofibrosis. MPL mutation testing is positive. No sustainable iron in...
Last active: May 18, 2025
What vitamins to avoid when taking Hydrea (hydroxyurea) for ET JAK2?
I currently have essential thrombocythemia with the JAK2 gene mutation. I currently take 500 mg of hydra seven times a week. I’m supposed to take...
Last active: Mar 13 11:23am
How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET?
I was diagnosed with Essential Thrombocythemia last November and am on Hydroxyurea 1500mg daily in an effort to reduce my platelet count, still in 9000s....
Last active: Apr 2 2:43pm
Does Hydroxyurea lower testosterone levels?
I am a 72 year old male and was diagnosed with Essential Thrombocythemia three years ago. After many tries at different doses my Oncologist settled...
Last active: Jul 26, 2025
New to Hydrea for ET
I am a 73 year old very active woman who was recently diagnosed with Essential Thrombocythemia by having a high blood platelet in a CBC...
Last active: Aug 5 11:11am
Endometerial cancer with essential throbocythemia (ET) Jak 2 mutation
I recently came across a research study that indicated a connection between essential throbocythemia (ET) with Jak2 mutation and endometerial cancer (EC), and wonder if...
Support Group: Gynecologic Cancers
Last active: Oct 23, 2025
I’ve had essential thrombocythaemia for 23 years now,and thyroid issue
I’ve had this disease for 23 years now,have taken Anagrelide,hydroxides,but now I’m injecting with Peg-interferon 90mcg weekly and it’s keeping my platelets stable,over the last...
Last active: Jun 9, 2024
Anyone experienced Bone Marrow Transplant with TP53 mutation?
After 10 healthy years, living with Essential Thrombocythemia w/JAK2 mutation and taking Hydroxyurea, my blood disease has transitioned into Myelofibrosis. I'm now taking Jakafi for...
Last active: Aug 7, 2025