Posts - MPN Voice | HealthUnlocked

MPN Voice

10,340 members14,252 posts

All posts for May 2019

Folate

Hi , I have ET, blood tests have shown I am low in folate. I had the tests done...
jodary profile image

ET with high HCT?

Hi there, I wonder if there's anyone else who was diagnosed with ET and has a he...
Alexbits profile image

Does using cannabis oil reduce yr platelet count?

I started using cannabis oil afew weeks ago but my platelets are low is the cann...
Kerry110 profile image
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Hemaglobin level Post PV Mf

My husband is on ruxolitanib 20mg twice a day and 500mg hydroxy every other day...
tracey13 profile image

High HCT and RBCs from stress?

Hi All, My son, age 22, had high RBCs, hemoglobin and hematocrit that were noted...
Sammie1997 profile image

PV in your twenties

I was diagnosed with PV 3 years ago, at age 49. I have learned to accept my new ...
clevemic profile image

Skin cancer removed - looked OK.

Hi folks I’ve just had the SCC removed from my cheek, and it should be fine H...

Petechaie

I call these “episodes” and wonder if anyone else experiences them.. I’ll be per...
Hayven profile image

Three MPN Voice Patients’ Forums confirmed

We are very pleased to announce details for 3 MPN Voice patients’ forums in Manc...
Mazcd profile image
Partner

Raised platelets ec

I have received very good information from people off here but am still worried ...
glyndale profile image

Hydro

Does anyone experience side effects with hydro
Sambo1978 profile image

High MCV

Hi, I have PV and being treated with hydroxycarbamide 1000/1500mg alternate days...
paddy67 profile image

I’ve had Polycythemia Vera for 10 years. Dr. suspects it is turning into Myleofibrosis

Good morning. I was diagnosed about 10 years ago with Polycythemia Vera. I am Ja...
Cknight6 profile image

Extreme itching after insect bites / stings

Morning, all - I'm trying to work out which of my regular medical things may be ...
mjn500 profile image

High Red Blood counts neg. Jak2 and all mutation tests

I have been diagnosed with primary polycythemia because all of my red blood coun...
Cali-Med profile image

MPN Unclassified

Hi I have just joined in and I’m glad to find a group like this. I have just bee...
Misty-3 profile image

For Mazcd: Are Jak2/Calr vaccines in clinical trials already,or just the Calr one? Can someone from the panel answer? Thank you

https://www.frontiersin.org/articles/10.3389/fimmu.2018.02264/full
Aneliv9 profile image

Raised platelets

I recently had a routine blood test and my platelets were 830 so my gp has refer...
glyndale profile image

Hydroxycarbamide query

Think I've got a bit of brain for.. old age ..had a nose bleed.. just came from ...
heathermc profile image

A guideline for the diagnosis and management of polycythaemia vera. A British Society for Haematology Guideline

My haematologist, Dr Francis at Sheffield Hallamshire Hospital, was thoughtful e...

1st Time Visual Aura

I’m waiting on mutation tests results that hematologist ordered and don’t have a...
Shellbi profile image

Recover from ET

I heard there are incidences that platelate count goes back to normal without an...
Monkey57 profile image

Regular interferon vs pegylated interferon side effects.

Has anyone noticed an improvement in side effects swapping from regular to pegyl...
fee13 profile image

Pain in hands

Does anyone with ET experience pain in hands specially on the finger joints and...
DamnYouEt profile image

Jakafi

Diagnosed with myelofibrosis on 10/17. Began jakafi 3 weeks ago. Platelets wen...
USSpurdy profile image

Rapid heartbeat

Hi. Does anyone find that they have the occasional bout of rapid heartbeat.? I’m...
Jlah profile image

Feeling much better.

Yesterday I had a venesection. I hadn't had one for 12 weeks and to be honest I ...
RobPV profile image

What fatigue?

Hello everyone, had a haematology appointment yesterday, following an increase i...
Bobthecob profile image

PV Hereditary or not?

My husband had Primary PV - does anyone know if its hereditary?.. Just thinking ...
TheFog profile image

Leg pain at night

Hi, all - I'm newly diagnosed with ET, JAK2+, this week. It started when I went ...
mjn500 profile image