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MPN Voice

10,445 members • 14,398 posts

All posts for March 2019

Review of 2018 Ash MPN Conference

Well worth reading, some good stuff in the pipeline! http://www.mpnresearchfoundation.org/images/files/file/ASH%20meeting%20Report%202018(1).pdf

Well worth reading, some good stuff in the pipeline! http://www.mpnresearchfound...

Paul123456

•5 years ago

4 Replies

MPN anti-inflammatory diet sheet

As there’s been lots of discussion on here about anti-inflammatory diets, I thought I’d post this MPN diet sheet. It was developed for the NUTRIENT trial, a US...

As there’s been lots of discussion on here about anti-inflammatory diets, I thou...

LucyGeering

•5 years ago

25 Replies

Apologies.

I recently wrote a post titled 'Frustrated'. I would like to apologise to anyone who has taken offence to my words. I did follow up with an apology of sorts...

I recently wrote a post titled 'Frustrated'. I would like to apologise to anyone...

RobPV

•5 years ago

33 Replies

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Sickness and hydroxy

Does the sickness ever stop on hydroxy dr put me bk on it one every other day for two weeks then bk up to one a day but I'm So nauseated all the time really...

Does the sickness ever stop on hydroxy dr put me bk on it one every other day fo...

Hahag

•5 years ago

7 Replies

Critical illness claim success!

This is a really big Thank you to those of you who inspired me to proceed with a claim. I was told on Friday that my claim was successful! As a first time Mum...

This is a really big Thank you to those of you who inspired me to proceed with a...

JojoWonder

•5 years ago

28 Replies

Love this ☀️

Yes!!!

Sand-Dancer

•5 years ago

5 Replies

The itch and polycythamia vera

I read somewhere that itching and polycythamia Vera has a better prognosis. Does any of you helpful members know if this is true.

I read somewhere that itching and polycythamia Vera has a better prognosis. Does...

Grumpy54

•5 years ago

9 Replies

Mucuos nos

I am diagnosed with ET in 2017. Since then i take 1 Hyrea aday. the mucous membranes in my nose have been inflamed for months. A corticosteroid dies net help....

I am diagnosed with ET in 2017. Since then i take 1 Hyrea aday. the mucous membr...

Mbzimb12

•5 years ago

6 Replies

Vitamin D and immune cells stimulate bone marrow disease (Myelofibrosis)

Hello everyone, I've just read this interesting finding:...

amalekh

•5 years ago

20 Replies

Diet blues and ET

So after extensive reading of posts and articles the general consensus is to reduce the chances of progression and symptoms of et eat an anti-inflammatory diet...

So after extensive reading of posts and articles the general consensus is to red...

Camelian

•5 years ago

33 Replies

Coq10 and ET

I read a post on here saying Coq10 helps with fatigue ( I'm etjak2 + and feel fatigued on a daily basis) after reading the post I read about Coq10 on Google...

I read a post on here saying Coq10 helps with fatigue ( I'm etjak2 + and feel fa...

Camelian

•5 years ago

10 Replies

Christchurch NZ mosque tragedy

I know that there are people from NZ and Aus who are mrmbers of this community - many of them post and reply regularly and help us all - they certainly help...

I know that there are people from NZ and Aus who are mrmbers of this community -...

Rachelthepotter

•5 years ago

15 Replies

I have a lump on my head

So I noticed this a few months ago and I'm 99.99% sure it's not a cysts or ingrown hair. It's a bump right above my right ear. It totally feels like solid...

So I noticed this a few months ago and I'm 99.99% sure it's not a cysts or ingro...

bronxthepitbull

•5 years ago

8 Replies

Red cell mass test

Hello. Thank goodness its Friday! Does anyone know if a red cell mass test is the same as the MCV result you get on a normal FBC? Somebody told me it was but...

Hello. Thank goodness its Friday! Does anyone know if a red cell mass test is t...

RedSunrise

•5 years ago

19 Replies

BAT and BALL strategy for living with MPNs

Hi I’ve been diagnosed with myelofibrosis now for about three years, and in thinking over how its been, and how it is now, I’ve come up with BAT and BALL as...

Hi I’ve been diagnosed with myelofibrosis now for about three years, and in thi...

Rachelthepotter

•5 years ago

16 Replies

Worth reading if considering Pegasys

Dr Silver is the Interferon guru, based of his long experience using Interferon as a first line treatment choice. Also he recommends INF/Pegasys at an early...

Dr Silver is the Interferon guru, based of his long experience using Interferon ...

Paul123456

•5 years ago

5 Replies

ET and Fatigue

I was diagnosed about six years ago with Essential Thrombocythaemia (ET) and was pretty much patted on the head, handed aspirin and told to come back every 6...

I was diagnosed about six years ago with Essential Thrombocythaemia (ET) and was...

Fuil

•5 years ago

52 Replies

Feet and ankle cramps

Greetings everyone, I have experienced strange feet and ankle cramps that start on the outside of the foot and outside of the ankle and goes up the outside of...

Greetings everyone, I have experienced strange feet and ankle cramps that start ...

mbr8076

•5 years ago

6 Replies

where can I buy Jakavi from?

Hi there. I am not sure if anyone will read this but I will still give it a try. My aunt has been diagnosed with secondary myelofibrosis and she has been...

Hi there. I am not sure if anyone will read this but I will still give it a try....

sonn4eto

•5 years ago

6 Replies

High AST and alt levels

Hello, all, I just received a copy of my blood chemistry I had last week and it said my AST and AL T levels are high. Of course, I didn’t know what that was...

Hello, all, I just received a copy of my blood chemistry I had last week and it...

Cja1956

•5 years ago

14 Replies

Iron infusion with MF and on Anagrelide and Hydroxy.

Hi all. My lovely wife, has been suffering with an upper GI bleed these past few days. Her normal haematologist is away. We contacted the hospital and the...

Hi all. My lovely wife, has been suffering with an upper GI bleed these past few...

jointpain

•5 years ago

10 Replies

Health Insurance

Hello all, I am travelling to Brazil next week and need to arrange Health Insurance. I have ET with platelets of 804 and just take 75mg aspirin daily. Will...

Hello all, I am travelling to Brazil next week and need to arrange Health Insura...

Debborah

•5 years ago

4 Replies

Platelet count 600

I went to doctors with sore hip and he did routine blood tests came back platelet count 600 he has now give me a letter for chest x-ray to rule out NG??? It...

I went to doctors with sore hip and he did routine blood tests came back platele...

belfastgirl62

•5 years ago

6 Replies

Painful feet

Suffering terrible with pains in my feet Worse first thing in morning , but still a problem all day My Consultant checked them for Blood-flow & sensation...

Suffering terrible with pains in my feet Worse first thing in morning , but sti...

Phelpsy

•5 years ago

23 Replies

Legs driving me mad

Hi just wondering if restless leg syndrome is more common in people with pv. It's been driving me mad especially late evening. I have to stay on my feet and...

Hi just wondering if restless leg syndrome is more common in people with pv. It'...

Jackgirl10

•5 years ago

11 Replies

Changing dose of Pegasys

Hi everyone hope you can help I have been on 45mg of Pegasys weekly for 17 months and bloods all great it’s worked very well for my PV with little side...

Hi everyone hope you can help I have been on 45mg of Pegasys weekly for 17 mont...

Poppy6060

•5 years ago

21 Replies

Travel Insurance

Hi, any recommendations for travel insurance please? Just Europe at the moment. Regards Jackie

Hi, any recommendations for travel insurance please? Just Europe at the moment. ...

Grumpyfairy

•5 years ago

11 Replies

Hydroxyurea induced pneumonia

Hi all. Apologies for the long post. I'm in this group as my husband has PV JAK2+, he started Hydroxy chemo tablet on the 31st of Jan this year. On the 21st of...

Hi all. Apologies for the long post. I'm in this group as my husband has PV JAK2...

Sian64

•5 years ago

14 Replies

Travel insurance on trial drug

Has anyone tried to get health insurance for travel to Europe whilst being on a trial drug? Is it possible? Is any company willing to take it on at a...

Has anyone tried to get health insurance for travel to Europe whilst being on a ...

skodaguy

•5 years ago

3 Replies

I'm soooo exhausted

I am 48 and was diagnosed with ET about 3 years ago. I just take aspirin, and though my platelets are in the 1100s, they are stable. However, I am just so...

I am 48 and was diagnosed with ET about 3 years ago. I just take aspirin, and th...

lynnieb

•5 years ago

19 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2019

Review of 2018 Ash MPN Conference

MPN anti-inflammatory diet sheet

Apologies.

Sickness and hydroxy

Critical illness claim success!

Love this ☀️

The itch and polycythamia vera

Mucuos nos

Vitamin D and immune cells stimulate bone marrow disease (Myelofibrosis)

Diet blues and ET

Coq10 and ET

Christchurch NZ mosque tragedy

I have a lump on my head

Red cell mass test

BAT and BALL strategy for living with MPNs

Worth reading if considering Pegasys

ET and Fatigue

Feet and ankle cramps

where can I buy Jakavi from?

High AST and alt levels

Iron infusion with MF and on Anagrelide and Hydroxy.

Health Insurance

Platelet count 600

Painful feet

Legs driving me mad

Changing dose of Pegasys

Travel Insurance

Hydroxyurea induced pneumonia

Travel insurance on trial drug

I'm soooo exhausted

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