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Public Support Group 274 total results
Discussions (33)
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...
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....
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...
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...
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?
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...
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....
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...
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...
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...
Needing help understanding ET and how it affects my life
I’m 28 and have not been formally diagnosed with Essential Thrombocythemia, but my platelet counts have been consistently high since I was at least 16...
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...
Getting rid of oral thrush: What works?
My mum has had essential thrombocythamia which has now progressed to myelofibrosis. Following a period where she's been very ill she has had the most...
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