Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 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 by medicheck as I have been having erratic thyroid results and wanted my...

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

jodary

•6 years ago

11 Replies

ET with high HCT?

Hi there, I wonder if there's anyone else who was diagnosed with ET and has a hematocrit level 48-50 and RBC 5.5-5.9, HGB 155-160? I'm male. I had a BMB year...

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

Alexbits

•6 years ago

16 Replies

Does using cannabis oil reduce yr platelet count?

I started using cannabis oil afew weeks ago but my platelets are low is the cannabis oil the reason for that?

I started using cannabis oil afew weeks ago but my platelets are low is the cann...

Kerry110

•6 years ago

2 Replies

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Hemaglobin level Post PV Mf

My husband is on ruxolitanib 20mg twice a day and 500mg hydroxy every other day . His HG level is 126 does anyone know if this is too low? All the other...

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

tracey13

•6 years ago

4 Replies

High HCT and RBCs from stress?

Hi All, My son, age 22, had high RBCs, hemoglobin and hematocrit that were noted after his third routine CBC of his life. They were high and trending up over...

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

Sammie1997

•6 years ago

12 Replies

PV in your twenties

I was diagnosed with PV 3 years ago, at age 49. I have learned to accept my new normal, have responded well to Pegasys, and am doing well overall. The support...

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

clevemic

•6 years ago

3 Replies

Skin cancer removed - looked OK.

Hi folks I’ve just had the SCC removed from my cheek, and it should be fine Histology results take 10 days, and the surgeon will email findings Very...

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

Rachelthepotter

•6 years ago

9 Replies

Petechaie

I call these “episodes” and wonder if anyone else experiences them.. I’ll be perfectly fine..then I feel “icky”, like I have the flu, I will start sweating and...

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

Hayven

•6 years ago

7 Replies

Three MPN Voice Patients’ Forums confirmed

We are very pleased to announce details for 3 MPN Voice patients’ forums in Manchester, Llandudno and Aberdeen. You are very welcome to attend any of the...

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

Mazcd

Partner•6 years ago

12 Replies

Raised platelets ec

I have received very good information from people off here but am still worried about secondary thrombocytosis which could be related to cancer . I dont see...

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

glyndale

•6 years ago

6 Replies

Hydro

Does anyone experience side effects with hydro

Sambo1978

•6 years ago

4 Replies

High MCV

Hi, I have PV and being treated with hydroxycarbamide 1000/1500mg alternate days. This seems to be keeping main bloods under control apart from a steady...

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

paddy67

•6 years ago

5 Replies

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 Jak2 positive. I was prescribed hydroxyurea and one low-dose aspirin a day. I...

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

Cknight6

•6 years ago

23 Replies

Extreme itching after insect bites / stings

Morning, all - I'm trying to work out which of my regular medical things may be ET related. I 've already found out that headaches and ringing in the ears can...

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

mjn500

•6 years ago

9 Replies

High Red Blood counts neg. Jak2 and all mutation tests

I have been diagnosed with primary polycythemia because all of my red blood counts were all quite high. My platelets were normal but monocytes were high and...

I have been diagnosed with primary polycythemia because all of my red blood coun...

Cali-Med

•6 years ago

11 Replies

MPN Unclassified

Hi I have just joined in and I’m glad to find a group like this. I have just been diagnosed with MPN unclassified after a bone marrow biopsy. Before, my...

Hi I have just joined in and I’m glad to find a group like this. I have just bee...

Misty-3

•6 years ago

25 Replies

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

•6 years ago

1 Reply

Raised platelets

I recently had a routine blood test and my platelets were 830 so my gp has referred me to a haematologist. I am very worried after reading about raised...

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

glyndale

•6 years ago

9 Replies

Hydroxycarbamide query

Think I've got a bit of brain for.. old age ..had a nose bleed.. just came from nowhere. Had a sinus feeling then nose started bleeding . Not for long and I...

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

heathermc

•6 years ago

4 Replies

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 enough to point this out to me and gave me the reference. He told me that, based...

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

PVPVPV

•6 years ago

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1st Time Visual Aura

I’m waiting on mutation tests results that hematologist ordered and don’t have a definitive diagnosis yet. Doctor is leaning toward ET. I have been having a...

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

Shellbi

•6 years ago

15 Replies

Recover from ET

I heard there are incidences that platelate count goes back to normal without any treatment and is unexplainable. Is that possible?

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

Monkey57

•6 years ago

8 Replies

Regular interferon vs pegylated interferon side effects.

Has anyone noticed an improvement in side effects swapping from regular to pegylated? My fatigue, weakness, exercise intolerance, hair loss etc is ruining my...

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

fee13

•6 years ago

7 Replies

Pain in hands

Does anyone with ET experience pain in hands specially on the finger joints and knee pain too?

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

DamnYouEt

•6 years ago

28 Replies

Jakafi

Diagnosed with myelofibrosis on 10/17. Began jakafi 3 weeks ago. Platelets went down to 80 and doctor told me to stop jakafi. Did that last night and...

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

USSpurdy

•6 years ago

7 Replies

Rapid heartbeat

Hi. Does anyone find that they have the occasional bout of rapid heartbeat.? I’m writing down my symptoms, times and length plus taking photos on drs advice...

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

Jlah

•6 years ago

11 Replies

Feeling much better.

Yesterday I had a venesection. I hadn't had one for 12 weeks and to be honest I was struggling. I think for me it should be every 8 weeks max. Today I feel 20...

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

RobPV

•6 years ago

9 Replies

What fatigue?

Hello everyone, had a haematology appointment yesterday, following an increase in Hydroxycarbamide my platelets are within a normal range. Struggling with...

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

Bobthecob

•6 years ago

54 Replies

PV Hereditary or not?

My husband had Primary PV - does anyone know if its hereditary?.. Just thinking of my 15 year old son. Perhaps I need to ask the question with the consultant..

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

TheFog

•6 years ago

7 Replies

Leg pain at night

Hi, all - I'm newly diagnosed with ET, JAK2+, this week. It started when I went to the GP last year due to pains I get in my calves and ankles at night, that...

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

mjn500

•6 years ago

14 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2019

Folate

ET with high HCT?

Does using cannabis oil reduce yr platelet count?

Hemaglobin level Post PV Mf

High HCT and RBCs from stress?

PV in your twenties

Skin cancer removed - looked OK.

Petechaie

Three MPN Voice Patients’ Forums confirmed

Raised platelets ec

Hydro

High MCV

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

Extreme itching after insect bites / stings

High Red Blood counts neg. Jak2 and all mutation tests

MPN Unclassified

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

Raised platelets

Hydroxycarbamide query

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

1st Time Visual Aura

Recover from ET

Regular interferon vs pegylated interferon side effects.

Pain in hands

Jakafi

Rapid heartbeat

Feeling much better.

What fatigue?

PV Hereditary or not?

Leg pain at night

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