Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,125 posts

All posts for February 2017

Reasonable travel insce

I have ET, one year now. SAGA QUOTe over £400 Single trip Anyone know of any lower Cost insurance Hoping 4 trip 2 SPAin Hopr

I have ET, one year now. SAGA QUOTe over £400 Single trip Anyone know of any l...

garden41BULBS

•8 years ago

16 Replies

Am I just getting old?

Hi my MPN family. I don't know if it's because I am 55 and getting older or my condition or the effects of my Hydroxy but I am getting terrible lower back...

Hi my MPN family. I don't know if it's because I am 55 and getting older or my ...

jillydabrat

•8 years ago

13 Replies

Vomiting

Good morning is there anything you should do if your physically sick not long after taking HU , I would imagine the HU won't be effective ? Thankyou

Good morning is there anything you should do if your physically sick not long a...

Hidden

•8 years ago

6 Replies

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When to medicate

I was diagnosed with ET JAK2 -ve about 18 months ago. My platelets are usually around 1300. I take aspirin, but no other medication for the ET (but a lot for...

I was diagnosed with ET JAK2 -ve about 18 months ago. My platelets are usually a...

lynnieb

•8 years ago

5 Replies

New consultant

Hi I have Myelofibrosis, can anyone recommend a good consultant between Halifax and London. I'd like to see Prof Harrison but it's quite a long way to travel....

Hi I have Myelofibrosis, can anyone recommend a good consultant between Halifax ...

Skye333

•8 years ago

7 Replies

Critical illness claim

Hi all, After notifying my insurers that I had been diagnosed with primary myelofibrosis I was encouraged by them to make a claim under my critical illness...

Hi all, After notifying my insurers that I had been diagnosed with primary myelo...

si405mon

•8 years ago

17 Replies

Swollen lips

Does anyone have swollen lips when their bloods increase? Not on HU. Thanks!

digijools

•8 years ago

1 Reply

Mouth Sores and HU

Hi Everyone, I've read most of the posts regarding mouth sores. I'm suffering right now and seems worse instead of better even with salt water baking soda...

Hi Everyone, I've read most of the posts regarding mouth sores. I'm suffering ri...

DH65

•8 years ago

15 Replies

Mother of all colds

Hi..I have come down hard & fast (6ish hours) with the worst cold and feel it's the worst I've had. I had my venesection 10days ago and just wondering is...

Hi..I have come down hard & fast (6ish hours) with the worst cold and feel it's...

cwayman11

•8 years ago

4 Replies

Calling Scottish PV's

Hi I've posted in the past with various questions and I thank all for your responses....i have now got to the point where I think a second opinion on my PV...

Hi I've posted in the past with various questions and I thank all for your respo...

rjw1

•8 years ago

35 Replies

Progression....

So I've not posted on here for a while, it's all been about my liver the past few months...anyway, yesterday I saw my Heamatologist; my playlets have dropped...

So I've not posted on here for a while, it's all been about my liver the past fe...

Chelle_

•8 years ago

20 Replies

I'm new to all this 😁

I'm new here . Have been told I have Polycythemia but don't have the JAK2 gene ,just wondered where I go next? Everything seem very vague ,perhaps it's because...

I'm new here . Have been told I have Polycythemia but don't have the JAK2 gene ,...

Cheryl47

•8 years ago

16 Replies

Help needed

Skye 333 Hi all I have deleted my app for this site (by mistake) can anyone tell me how to retrieve it please I am useless at this kind of thing. Thanks Janet

Skye 333 Hi all I have deleted my app for this site (by mistake) can anyone tell...

Skye333

•8 years ago

4 Replies

From ET diagnosis to uncertainty !

Can anyone shed any light on my situation please? I was (so I thought) diagnosed with ET June 2015. My platelets are not very high, over the last 2 years...

Can anyone shed any light on my situation please? I was (so I thought) diagnosed...

Kazzy65

•8 years ago

11 Replies

hi all again, can anyone give me some advice on work please, I was diagnosed in ...

tina6

•8 years ago

1 Reply

To BMB or not to BMB, that is the question...

And this is the answer, from Professor Claire Harrison, Guy’s and St Thomas’ Hospital, London. Confusing information and some different opinions. When...

And this is the answer, from Professor Claire Harrison, Guy’s and St Thomas’ Hos...

Mazcd

Partner•8 years ago

62 Replies

Fatigue

Hi...everywhere I read it talks about the fatigue and many people here also seem to suffer. Everytime I've mentioned it to my haematologist he says 'no...

Hi...everywhere I read it talks about the fatigue and many people here also seem...

cwayman11

•8 years ago

19 Replies

ET & Treatment

I'm new to all of this and some what overwhelmed. I thought I would be able to carry on as normal after my diagnosis of ET last year, I'm injecting x3 a week...

I'm new to all of this and some what overwhelmed. I thought I would be able to c...

Tpearson

•8 years ago

12 Replies

Newby

Hi I'm new to this having had my diagnosis of Polycythemia Rubi Vera PV confirmed a week ago. Has anyone any advice on diet? I know I shouldn't eat meat and...

Hi I'm new to this having had my diagnosis of Polycythemia Rubi Vera PV confirme...

Hilarya

•8 years ago

11 Replies

Looking forward to my venesection

Hi Guys, I've come to the conclusion that the majority of the public don't understand what fatigue means and they think we are a bit tired when we mention that...

Hi Guys, I've come to the conclusion that the majority of the public don't under...

Aime

•8 years ago

36 Replies

Karen

Hi, have had my condition now for 18 months, the bone pain and tingling sensations in my arms and upper body are getting slightly worse, at the moment am just...

Hi, have had my condition now for 18 months, the bone pain and tingling sensatio...

ktd1955

•8 years ago

3 Replies

Fundraising Update December 2016 and January - February 2017

There were lots of fundraising events in 2016, we have been amazed by the variety of ways that our MPN Voice supporters have raised money to support us, taking...

There were lots of fundraising events in 2016, we have been amazed by the variet...

Mazcd

Partner•8 years ago

1 Reply

New Here - Working on a Diagnosis

Hello everyone! I just thought I'd share an introduction. I am Chelsea, almost 39 married with four kiddos (1, 6, 11, & 14). I have had high platelets since...

Hello everyone! I just thought I'd share an introduction. I am Chelsea, almost...

ChelseaF

•8 years ago

6 Replies

learning about ET

Hi All I am new to all this, I was diagnosed in October 2016 with having ET, this was diagnosed after having to have a brain scan which confirmed that I had...

Hi All I am new to all this, I was diagnosed in October 2016 with having ET, thi...

tina6

•8 years ago

18 Replies

Long haul flight Enoxaparin 40mg

Last year when my platelets were raised we were away for my big 50th birthday in Barbados & whilst on holiday my GP called me to say after speaking to a...

Last year when my platelets were raised we were away for my big 50th birthday in...

Jonnymitts

•8 years ago

2 Replies

Ruxolitinib for ET?

Is Rux approved for ET? I had to stop taking Hydrea due to developing vasculitis/erythema nodosum caused by the Hydrea. My doctor is now motivating to my...

Is Rux approved for ET? I had to stop taking Hydrea due to developing vasculitis...

Lab-Rat

•8 years ago

9 Replies

What time of day to take Hydroxy?

I've got ET and started taking Hydroxycarbamide 10 days ago. I'm taking it in the early morning with various other tablets. I'm now wondering whether this is a...

I've got ET and started taking Hydroxycarbamide 10 days ago. I'm taking it in th...

ChrisAnnSen

•8 years ago

18 Replies

What is 'Essential' about ET?

I'm intrigued with the name of this condition. What is 'Essential' about it; is there such a thing as Non-Essential Thrombocythemia? It just seems such a...

I'm intrigued with the name of this condition. What is 'Essential' about it; is ...

ChrisAnnSen

•8 years ago

12 Replies

Deleted account

Hi im afraid i have accidently deleted my account i joined in 2015 username catwoman so im back to square one for some reason even with using original email...

Hi im afraid i have accidently deleted my account i joined in 2015 username catw...

catwomen2015

•8 years ago

1 Reply

Medication for ET - HELP

Hi everyone. Looking to find someone in a similar boat here. I have Essential Thrombocythemia as well as APS. I'm recently on warfarin for APS but they now...

Hi everyone. Looking to find someone in a similar boat here. I have Essential T...

Emma_shall

•8 years ago

14 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2017

Reasonable travel insce

Am I just getting old?

Vomiting

When to medicate

New consultant

Critical illness claim

Swollen lips

Mouth Sores and HU

Mother of all colds

Calling Scottish PV's

Progression....

I'm new to all this 😁

Help needed

From ET diagnosis to uncertainty !

work related

To BMB or not to BMB, that is the question...

Fatigue

ET & Treatment

Newby

Looking forward to my venesection

Karen

Fundraising Update December 2016 and January - February 2017

New Here - Working on a Diagnosis

learning about ET

Long haul flight Enoxaparin 40mg

Ruxolitinib for ET?

What time of day to take Hydroxy?

What is 'Essential' about ET?

Deleted account

Medication for ET - HELP

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