Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for October 2015

MPN Voice October Fundraising Update

MPN Voice October Fundraising Update I don’t think September will ever be the same again! All over the country and in Europe there were Coffee Mornings, Tea...

MPN Voice October Fundraising Update I don’t think September will ever be the ...

MarilynMPNVoice

Fundraising•9 years ago

Be the first to reply

MPNs and diabetes

A few months ago I had the HB1AC test and I had a slightly elevated sugar level of 43 (classed as pre diabetic). Every few weeks I get my blood checked first...

A few months ago I had the HB1AC test and I had a slightly elevated sugar level ...

MarkD6701

•9 years ago

5 Replies

Newbie

Hi. Live in US. Am 64, diagnosed almost 2 yrs ago w/ ET & JAK2 positive. Just started Hydroxy 2 weeks ago after more blood clots discovered. New doc says...

Hi. Live in US. Am 64, diagnosed almost 2 yrs ago w/ ET & JAK2 positive. Just s...

katiewalsh

•9 years ago

22 Replies

Want to take advantage of all our features? Just log in!

Getting no results with pegasys

Hi I'm new to this post- I have et and pv and have been on Pegasys for 6 months with no change in blood counts. Has anyone had the same problem? Don't know if...

Hi I'm new to this post- I have et and pv and have been on Pegasys for 6 months ...

ggrana

•9 years ago

6 Replies

ET and who lives in the US

So many people live abroad that I was wondering how many live in the US and where, how old, are you on meds and what was your platelet count when diag. So...

So many people live abroad that I was wondering how many live in the US and wher...

mickey64

•9 years ago

26 Replies

New Medicine Jakifi

Curious to know about the new medicine called Jakifi, I believe some are taking under the name of Rutimide or something like that. My Dr says they found in...

Curious to know about the new medicine called Jakifi, I believe some are taking ...

mickey64

•9 years ago

17 Replies

I know just how this feels !

If it's not one thing it's another ...just ..Keep Smiling ....

Twinkly

•9 years ago

5 Replies

Shingles Shot, ET and Hydroxea

Hi all, you have always helped me out so again I need to ask a question. I was recently diagnosed with ET but surely I have had this for a long while, my GP...

Hi all, you have always helped me out so again I need to ask a question. I was ...

mickey64

•9 years ago

19 Replies

getting diagnosed

I have just had a well being blood test and was found to have high red blood cell count. I received a phone call from receptionist with message from doctor....

I have just had a well being blood test and was found to have high red blood cel...

SueMic

•9 years ago

22 Replies

[b]MPN Voice Living with MPNs Day 2015 – TICKETS STILL AVAILABLE[/b]

Saturday 14th November 2015, 8.45 am – 5 pm Brunei Gallery, School of Oriental & African Studies, Thornhaugh Street, Russell Square, London, WC1H 0XG...

Saturday 14th November 2015, 8.45 am – 5 pm Brunei Gallery, School of Oriental ...

Mazcd

Partner•9 years ago

1 Reply

Hydroxea please respond

I could of swore I posted something about taking Hydroxea but have no replies and cannot find it? So forgive me if its a double post. Hemo Dr insists I start...

I could of swore I posted something about taking Hydroxea but have no replies an...

mickey64

•9 years ago

15 Replies

Relocating to Australia for a while......

I am considering moving from the UK to Australia for a few months over the winter to stay with my sister near Canberra. Can anyone recommend suitable travel...

I am considering moving from the UK to Australia for a few months over the winte...

ETphonehome

•9 years ago

18 Replies

Important safety message Ladies please take note

Important safety message ladies - please take note!

lizzziep

•9 years ago

6 Replies

Injections to fly??

I have been told - following bruising on the back of my knee post flight that I will need an injection prior to travel . Any advise or experience ?

I have been told - following bruising on the back of my knee post flight that I ...

craigdarcy

•9 years ago

3 Replies

To take Hydrea or not

I have recently been diagnosed with PRV and have had 1 venesection in the past 4 months. I met my new consultant yesterday, who was about to give me a...

I have recently been diagnosed with PRV and have had 1 venesection in the past 4...

Splb3317

•9 years ago

31 Replies

This is definitely me!

Love to you all. xx

Loubprv

Volunteer•9 years ago

5 Replies

This needs little wording .

But I bet your all smiling and nodding now !!

Twinkly

•9 years ago

14 Replies

ET, JAK+ scared

Hi everyone, I was diag with ET and they said I was Jak2 positive. Back in Feb my platelets were 556, my GP said nothing but in June I happen to look at my...

Hi everyone, I was diag with ET and they said I was Jak2 positive. Back in Feb ...

mickey64

•9 years ago

17 Replies

Glad that's over!

Thought I'd post a wee update on my BMB, which I had on Wednesday last week. I wasn't too worried as I'd had lots of supportive responses to some of my...

Thought I'd post a wee update on my BMB, which I had on Wednesday last week. I w...

DENICE66

•9 years ago

21 Replies

Newly diagnosed

Here I am newly diagnosed with ETand also tested positive for Jak2 and trying to decide when to start the HU. I am rather afraid of this drug and wondered if...

Here I am newly diagnosed with ETand also tested positive for Jak2 and trying to...

Klys

•9 years ago

31 Replies

Starting Interferon

Well that was an interesting morning! Went to my appointment knowing I'd probably need to start treatment as my platelets have been climbing for a while - had...

Well that was an interesting morning! Went to my appointment knowing I'd probabl...

AndyT

•9 years ago

25 Replies

Thank you all for your love and concern !

Just beginning to feel like my twinkly old self again ....

Twinkly

•9 years ago

21 Replies

Have ET, can I claim benefits

I have ET, was wondering can I claim pip or any other benefits. I do work in a supermarket 20 hours a week but I am finding it a bit of struggle to manage...

I have ET, was wondering can I claim pip or any other benefits. I do work in a ...

sjdard

•9 years ago

13 Replies

First BMB not so bad

After only finding out a week ago that I have ET, I had my first BMB yesterday. I'd like to thank everyone who advised me it wasn't so bad, as I went in calm....

After only finding out a week ago that I have ET, I had my first BMB yesterday. ...

lynnieb

•9 years ago

6 Replies

Been so busy

Hi everyone - been so busy lately but I was just getting in touch with an old friend to meet up like we do every year and realised it is 1 year ago that I...

Hi everyone - been so busy lately but I was just getting in touch with an old fr...

Lesleyt10

•9 years ago

9 Replies

Living with PV for 47 years after father diagnosed days earlier.

In 1968-9 my father was diagnosed with PV and Spherocytosis by VA. His doctors suggested his direct family members also be test to see if disorders were...

In 1968-9 my father was diagnosed with PV and Spherocytosis by VA. His doct...

Hidden

•9 years ago

9 Replies

I missed you all .but been feeling a bit ucky!

Been to the clinic ,because my spleen is uncomfortable ..it's making me sick at night ,Im getting tired and grumpy during the daytime ..iv been given high...

Been to the clinic ,because my spleen is uncomfortable ..it's making me sick at ...

Twinkly

•9 years ago

28 Replies

Patients forum, Liverpool

Just a quick thank you to everyone who organised an enjoyable and informative forum last Friday. Waiting for the next North West one now. Janet, ET Dx 2011

Just a quick thank you to everyone who organised an enjoyable and informative fo...

eastwood1932

•9 years ago

3 Replies

Pegylated interferon

A family member is on this but is unsure about how cold the fridge should be to store and how long it can be out the fridge before its ineffective. Does...

A family member is on this but is unsure about how cold the fridge should be to...

Tarot1234

•9 years ago

4 Replies

Home Is Where My Heart Is. . . ☺

Hello everyone, just a quick update. As you may have guessed by the title they have discharged me yesterday and we finally landed home just after midnight...

Hello everyone, just a quick update. As you may have guessed by the title they h...

JediReject

•9 years ago

41 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2015

MPN Voice October Fundraising Update

MPNs and diabetes

Newbie

Getting no results with pegasys

ET and who lives in the US

New Medicine Jakifi

I know just how this feels !

Shingles Shot, ET and Hydroxea

getting diagnosed

[b]MPN Voice Living with MPNs Day 2015 – TICKETS STILL AVAILABLE[/b]

Hydroxea please respond

Relocating to Australia for a while......

Important safety message Ladies please take note

Injections to fly??

To take Hydrea or not

This is definitely me!

This needs little wording .

ET, JAK+ scared

Glad that's over!

Newly diagnosed

Starting Interferon

Thank you all for your love and concern !

Have ET, can I claim benefits

First BMB not so bad

Been so busy

Living with PV for 47 years after father diagnosed days earlier.

I missed you all .but been feeling a bit ucky!

Patients forum, Liverpool

Pegylated interferon

Home Is Where My Heart Is. . . ☺

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive