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Public Support Group 411 total results
Discussions (55)
What's the latest Jakafi (ruxolitinib) for polycythemia vera (PV)?
What is the latest information about jajafi and blood clots in treatment of Polycemia Vera?
Anyone struggling with Polycythemia Vera, low iron and Hypothyroidism?
Just wondering if anyone else is struggling with PV, very low-iron and Hypothyroidism? I’m feeling like I’m on a never ending merry-go-round with trying to...
Is it safe to have a tattoo if you have Polycythemia Vera?
Newly diagnosed and am considering getting another tattoo but concerned about whether tattooing is problematic
Polycythemia Vera: What foods should I eat?
what foods should I eat ?
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 will...
Polycythemia vera (PV) and bone pain: What helps?
My bone pain with PV is becoming worse. Has anyone found anything that helps.
Has anyone experienced neuropathy with polycythemia vera (PV)?
Has anyone been experiencing Nueropathy with PV? The tops of my hands and feet/ shins are burning. I’m having tingling in my face also. I...
Polycythemia vera (Jak negative): What to do when ferritin low?
I am 59 yrs old male with jak neg polycythemia vera managing with only phlebotomy every 4 to 5 months in last 5 yrs now...
Anyone else taking Hydroxyurea plus Gabapentin for Polycythemia Vera?
Diagnosed with PV two years ago at age 69. Until this diagnosis I had been very healthy my whole life. Never took medication except for...
When is hydroxurea usually added to treat polycythemia vera (PV)?
When is hydroxurea usually added to treatment for Polycemia Vera? I am currently on low dose aspirin
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...
I was diagnosed with Polycythemia vera last Sept. Is pain normal?
I am being treated with Hydroxyurea. The least bit of exercise results in pain on right side of chest and back, along with extreme shortness...
polycythemia vera: Rusfertide in stage 3 research: Any info?
There is a drug called rusfertide in stage 3 research. It is showing great promise in managing hemtocrit thereby avoiding phlebotomies. What other info does...
Polycythemia Vera: Is there anything I can do for fatigue at home?
Is there anything I can do for fatigue on a home basis? Diets, iron, anything? I’m low on ferritin, my count was 49.9% so they...
My mom has Polycythemia Vera: Can PV be managed without phlebotomies?
HiMy mom (74) was diagnosed with PV (aug 2024). Hemotologist believes it may have had PV since 2022. She did the Jak2 test and she’s...
Diagnosed polycythemia vera at 26: Any young PV patients out there?
Hi everyone,I am in the process of being diagnosed with PV. I am 26 years old and I am going to be honest , I...
Polycythemia Vera, lupus, MGUS more. Can't find MM oncologist
Hi All. Finally have formal diagnosis on several things. See title. Plus CHIP and chronic anemia. I can't find care. Not sure what to do....
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...
Interferon-alpha impact on JAK2 allele ratio?
Anyone with Polycythemia Vera (PV) or Myelofibrosis (MF) with JAK2 verified mutation, please share with me your JAK2 allele ratios while taking Interferon-Alpha (INN). I...
Polycythemia causing high output cardiac failure
My spouse has polycythemia Vera, dx about 6 years ago. She did well on hydrea 500mg daily until about 3 months ago. Her platelets began...
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