Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for May 2017

Grrrrr!!!

Yesterday a relative asked me to a coffee morning, I said unfortunately it coincided with my haematology appointment. She asked why I went to haematology. I...

Yesterday a relative asked me to a coffee morning, I said unfortunately it coinc...

lizzziep

•7 years ago

33 Replies

Feeling better today

After such an awful day yesterday I have woken up feeling relatively normal - what a strange illness this is! A big thank you for the support received...

After such an awful day yesterday I have woken up feeling relatively normal - wh...

skipperL

•7 years ago

11 Replies

Hidden grapefruit source

Just watched the latest Food Unwrapped. Apparently Earl Grey tea contains grapefruit oil and the cheaper the product the more it has rather than bergamon oil....

Just watched the latest Food Unwrapped. Apparently Earl Grey tea contains grapef...

skodaguy

•7 years ago

6 Replies

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blackouts

ive jad 2 occasions now where for no reason and in a sittimg position ive blacked out. 1st on a plane to Tenerife last sept. 2nd in a hotel breakfast room lost...

ive jad 2 occasions now where for no reason and in a sittimg position ive blacke...

Hughesf

•7 years ago

4 Replies

Feeling awful today

Yesterday was so good - I felt full of energy - cleared out my cupboards, went clothes shopping, sorted out my oil paints - i felt the Hydroxy must be doing me...

Yesterday was so good - I felt full of energy - cleared out my cupboards, went c...

skipperL

•7 years ago

37 Replies

PEGULATED INTERFERON -BONE PAIN

Hi I've had ET for 7 years now and have been put on pegulated interferon after other treatments failed to control my platelet levels. I'm fine with it apart...

Hi I've had ET for 7 years now and have been put on pegulated interferon after o...

Poppy21

•7 years ago

2 Replies

DID ANYONES FATIGUE PROBLEMS BEGIN GRADUALLY?

Hi. I've been reading with interest the recent question about fatigue. My question is whether any of you had just mild fatigue in the beginning? My specialist...

Hi. I've been reading with interest the recent question about fatigue. My questi...

katiewalsh

•7 years ago

19 Replies

Exemption Certificate

I currently have a pre-paid prescription card that I pay £104 a year. Do you all have the same or do you have the Exemption Certificates? Hope your all ok....

I currently have a pre-paid prescription card that I pay £104 a year. Do you all...

Chelle_

•7 years ago

9 Replies

I've to start on hydroxyurea

Any advice would be appreciated. Best wishes lainy 🤗

Lainy1

•7 years ago

39 Replies

Fatigue

Following my post from 3 months ago I must say the springtime has brought huge relief and I am back to normal. How strange this is! Why? Nothing has changed...

Following my post from 3 months ago I must say the springtime has brought huge r...

lucieboo

•7 years ago

3 Replies

night time cramps

I was diagnosed with ET last year and take Hydroxicarbamide (x2 daily) and asprin. Recently I have been getting really bad cramp in calf and thigh, usually...

I was diagnosed with ET last year and take Hydroxicarbamide (x2 daily) and aspri...

Stephen399b

•7 years ago

3 Replies

Fatigue and heamotologists

It is quite shocking to read the number of examples of heamos dismissing the serious fatigue we all seem to be suffering with statements like "your bloods are...

It is quite shocking to read the number of examples of heamos dismissing the ser...

Garden987

•7 years ago

5 Replies

Change Hydroxycarbomide to Pegasys?

Hi all. I'm 70 and had ET from 2003 until 2014 when I progressed to PV. I was then put on hydroxycarbomide 500 my per day. It has brought my countsdown to...

Hi all. I'm 70 and had ET from 2003 until 2014 when I progressed to PV. I was th...

Anita53

•7 years ago

11 Replies

TO MAZ

PLEASE MAY MY SISTER Attend with me CHESTER Forum LATSEPOT

garden41BULBS

•7 years ago

1 Reply

MPN Postings

I haven't received any postings for the last few days, anyone else had any problems ? I haven't changed any of my settings. Perhaps the cyber attacks have...

I haven't received any postings for the last few days, anyone else had any probl...

crapaud

•7 years ago

1 Reply

Leeds Forum

Big thank you to Maz and all the team for a really great day yesterday. Special thanks to the medics for good information and help. Venue great. Food great....

Big thank you to Maz and all the team for a really great day yesterday. Special ...

charlie98

•7 years ago

Be the first to reply

New to the forun

Good afternoon to everyone out there I've recently been diagnosed with myelofibrosis Which I think is abbreviated to MF on the forum. I still have not got to...

Good afternoon to everyone out there I've recently been diagnosed with myelofib...

Jimmyh29

•7 years ago

14 Replies

Leeds Forum

My first forum and it was fabulous. Met some lovely people and listened to their stories. The speakers were informative and so approachable. Food was lovely...

My first forum and it was fabulous. Met some lovely people and listened to thei...

Sksarj

•7 years ago

3 Replies

Leeds Forum

Hi everyone I would like to that Maz and her team for organising the Patients forum in Leeds yesterday. It was a great day full of information from Maz and the...

Hi everyone I would like to that Maz and her team for organising the Patients fo...

Skye333

•7 years ago

2 Replies

Hydroxycarbamide newbie

Hi, I have just started hydroxycarbamide 3 days ago and really appreciated reading some of your experiences. I have Jak2 positive etc etc & after 3 yrs of...

Hi, I have just started hydroxycarbamide 3 days ago and really appreciated readi...

Belgobrit72

•7 years ago

14 Replies

Polycythemia vera

Hello. I'm here on behalf of my husband . He had a heart attack and 2 stents put in at that time. Year Oct 2008 His haemoglobin level on admission was 20.2 ....

Hello. I'm here on behalf of my husband . He had a heart attack and 2 stents pu...

Gcart

•7 years ago

9 Replies

Hi all!

I've just joined this site, have been diagnosed with ET and PV for about 4 years now, am relatively young, was diagnosed at 36 and had a stroke at 26! At the...

I've just joined this site, have been diagnosed with ET and PV for about 4 years...

Essexdoll

•7 years ago

30 Replies

Pain after bmb

Has anyone else had pain after their bone marrow biopsy, I had mine a week ago & today started pain all around it, the actual wound is fine, healing well, but...

Has anyone else had pain after their bone marrow biopsy, I had mine a week ago &...

Melaniem59

•7 years ago

13 Replies

Hydroxyurea under age 50 ? Anyone

Hi MPN family, I just want to ask is anyone on hydroxyurea that is around the 50 age mark ? Or do you defo not get put on it before 60. I know they are not...

Hi MPN family, I just want to ask is anyone on hydroxyurea that is around the 50...

Lainy1

•7 years ago

22 Replies

Life with ET.

Hi !! I've been in here for a while without realising that it would be best and most well-mannered to have a profile :) So it goes !! I've been on Pegasys...

Hi !! I've been in here for a while without realising that it would be best and ...

yarrowleaf

•7 years ago

14 Replies

Summer days ..

Here's the latest puppy at home !

Twinkly

•7 years ago

9 Replies

You are what you eat ,,never a truer word spoken ..if you want to help your MPN ,,eat clean and green ,give up the coffee ,and cans of pop..

Come on now ,,summer is coming ,let's get well and stronger ,Let's change our eating habits for the healthier lifestyle . When we go to the supermarket .spend...

Come on now ,,summer is coming ,let's get well and stronger ,Let's change our ea...

Twinkly

•7 years ago

6 Replies

PV Bone Pain

Hi anyone with PV, I was diagnosed 2 years ago and have been on hydroxycarbomide, however the bone pain is worsening especially at night and I was wondering if...

Hi anyone with PV, I was diagnosed 2 years ago and have been on hydroxycarbomide...

ktd1955

•7 years ago

6 Replies

Mouth ulcers for years prior to ET diagnosis any one troubled by them pre hydroxy treatment?

I have had problems with mouth ulcers for many years, but they have become almost constant companions now. At some point it was speculated that I had Behcet's...

I have had problems with mouth ulcers for many years, but they have become almos...

stillkicking

•7 years ago

7 Replies

Pegasy

Hello everyone, just need a bitof reassurance I was taken off Anagrelide 2 weeks ago as it didn't agree with me I had terrible palpitations. My consultant...

Hello everyone, just need a bitof reassurance I was taken off Anagrelide 2 weeks...

linphy

•7 years ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2017

Grrrrr!!!

Feeling better today

Hidden grapefruit source

blackouts

Feeling awful today

PEGULATED INTERFERON -BONE PAIN

DID ANYONES FATIGUE PROBLEMS BEGIN GRADUALLY?

Exemption Certificate

I've to start on hydroxyurea

Fatigue

night time cramps

Fatigue and heamotologists

Change Hydroxycarbomide to Pegasys?

TO MAZ

MPN Postings

Leeds Forum

New to the forun

Leeds Forum

Leeds Forum

Hydroxycarbamide newbie

Polycythemia vera

Hi all!

Pain after bmb

Hydroxyurea under age 50 ? Anyone

Life with ET.

Summer days ..

You are what you eat ,,never a truer word spoken ..if you want to help your MPN ,,eat clean and green ,give up the coffee ,and cans of pop..

PV Bone Pain

Mouth ulcers for years prior to ET diagnosis any one troubled by them pre hydroxy treatment?

Pegasy

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