Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for July 2018

Itching/pruritis as a side effect of Pegasys

Pegasys and this crazy, unmanageable itching!!!! Does anyone have a recommended treatment for the pruritis caused by Pegasys? I have been prescribed Eurax but...

Pegasys and this crazy, unmanageable itching!!!! Does anyone have a recommended ...

JackLina

•6 years ago

28 Replies

Prior To Being Diagnosed With ET.

Has Anyone Ever Found Out Exactly How Long They Have Actually Had ET Prior To Being Diagnosed. I have had almost all the symptoms you get when you have ET...

Has Anyone Ever Found Out Exactly How Long They Have Actually Had ET Prior To Be...

Mycancerconcern1

•6 years ago

17 Replies

Mutations & mpns.

Do anyone know what the real significance is regarding whether or not u ave gene mutation or not.i'm etjak2 but still unsure whether it makes any difference...

Do anyone know what the real significance is regarding whether or not u ave gene...

Tico

•6 years ago

7 Replies

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

Prof Harrison on MF

Some of us here have been lucky enough to see Prof Harrison, she is an amazing mix of knowledge and compassion. Here is her recent summary of MF treatment...

Some of us here have been lucky enough to see Prof Harrison, she is an amazing m...

Paul123456

•6 years ago

5 Replies

SYMPTOMS OF PRIMARY POLYCYTHAEMIA

I have been told by my GP and Haematologist that I should have no noticeable symptoms with Polycythaemia . However since being diagnosed in March 2017 I have...

I have been told by my GP and Haematologist that I should have no noticeable sym...

Heather270240

•6 years ago

12 Replies

Disposal of unused Pegasys Interferon

I live in the US, and am discouraged at the wastefulness that the manufacturers of Pegasys Interferon have shown. Each vial holds 180micrograms of medication....

I live in the US, and am discouraged at the wastefulness that the manufacturers ...

clevemic

•6 years ago

10 Replies

Pomegranate Juice and Turmeric.....and Anagrelide!

Hi everyone, so hoped that Pom and turmeric would keep down my platelets, but sadly they suddenly roared up to 1300 and worries re strokes necessitated...

Hi everyone, so hoped that Pom and turmeric would keep down my platelets, but sa...

Tinkerbell13

•6 years ago

10 Replies

Hot. Hot. Hot. And stressed.

The heat is getting to me (compounding the effects of a sore throat this past week and general seasonal snottiness) and making me feel really quite low. Next...

The heat is getting to me (compounding the effects of a sore throat this past we...

Ebot

•6 years ago

26 Replies

Hair loss and hydroxy

I know this should be the least of my concerns about taking hydroxyurea, but .... What are others’ experiences with hair loss, taking 1 capsule per day? I’m...

I know this should be the least of my concerns about taking hydroxyurea, but ......

WileyFrench

•6 years ago

44 Replies

Pegasus interferon and chronic sore throat

I've had a horrible sore throat now for 11 days and I'm starting to feel very down about it (probably due to lack of sleep rather than the sore throat!). I've...

I've had a horrible sore throat now for 11 days and I'm starting to feel very do...

hansyhand

•6 years ago

12 Replies

Anagrelide

Having had ET for the past 11 years very successfully treated with HU I recently developed a leg ulcer that was due to the extended use of HU. Taken off HU and...

Having had ET for the past 11 years very successfully treated with HU I recently...

Milburn

•6 years ago

4 Replies

Stress and fear

Hi, Went to my hematologist today.he told me to donate 1 unit of blood today and come with CBC next month.I donated 1 unit just 2 months back and my hct is 49...

Hi, Went to my hematologist today.he told me to donate 1 unit of blood today and...

Hidden

•6 years ago

39 Replies

Having my first BMB next Tuesday!

Justhe thought I would post on this fantastic site, that I saw my heamotoligist yesterday and have agreed to have my first BMB next Tuesday. I cancelled the...

Justhe thought I would post on this fantastic site, that I saw my heamotoligist ...

Sarahjane100

•6 years ago

20 Replies

MPN Research Foundation - new Stem CellTransplant Timing Tool for MPN Patients

Hi all An email just dtopprd into my inbox from the Mpn Research Foundation and they have today launched a new tool to help decide when to think abt a SCT...

Hi all An email just dtopprd into my inbox from the Mpn Research Foundation and ...

Rachelthepotter

•6 years ago

7 Replies

Stem Cell Transplants

https://mpnforum.com/nicrev Hope this link works. Interesting interview about Stem Cell Transplant risk:reward and timing. I thought quite reassuring,...

https://mpnforum.com/nicrev Hope this link works. Interesting interview about St...

Paul123456

•6 years ago

7 Replies

Met someone with ET!

I got talking to a lady in the haematology department the other day, we'd just been told there was a hold up in the lab so would be waiting a while for...

I got talking to a lady in the haematology department the other day, we'd just b...

lizzziep

•6 years ago

22 Replies

and it was all going so well...........

So, Monday morning arrived with bright blue skies and off I trot to to have my first annual checkup after being diagnosed with ET JAK2+ last summer. Everything...

So, Monday morning arrived with bright blue skies and off I trot to to have my f...

Ovingite

•6 years ago

20 Replies

Fluid around ankles

Good morning everyone, A question please. I take hydroxy 500mg, blood pressure medicine, aspirin and statins. I have fluid around my ankles. Does anyone know...

Good morning everyone, A question please. I take hydroxy 500mg, blood pressure m...

Mardigras

•6 years ago

5 Replies

Can the food you eat increase platelets

Hi everyone - I had my 4 monthly blood tests results yesterday and whilst they are not astronomically high they have been steadily increasing to the point in a...

Hi everyone - I had my 4 monthly blood tests results yesterday and whilst they a...

jimb7174

•6 years ago

15 Replies

Flu Jab

Hey guys, Bit early to be thinking about it I know but do we need to take the flu jab? Ive only ever had it once when I was working in a hospital. My mum gets...

Hey guys, Bit early to be thinking about it I know but do we need to take the f...

Mackydee123

•6 years ago

19 Replies

Just took first hydroxy

Well, I did it. After spending most of yesterday worried and anxious, and going back and forth between “I’m not going to take it” and “I’m going to die” (okay,...

Well, I did it. After spending most of yesterday worried and anxious, and going ...

WileyFrench

•6 years ago

40 Replies

Grapefruit Juice and Interferon

I've been drinking pink grapefruit juice for sometime and then read the MPN Voice on Interferon which said that it was contra-indicated with Interferon, which...

I've been drinking pink grapefruit juice for sometime and then read the MPN Voic...

AnitaJ

•6 years ago

7 Replies

To hydroxy or not to hydroxy

I’m sorry to keep asking questions as I try to come to terms with what you already have done, but just one more: is there anyone here like me, ET diagnosis...

I’m sorry to keep asking questions as I try to come to terms with what you alrea...

WileyFrench

•6 years ago

9 Replies

Keeping Interferon cool whilst travelling

Hi all Just wondering if anyone has any tips for travelling with Interferon? I’m travelling to Portugal in a couple of weeks and will need to take 5 syringes...

Hi all Just wondering if anyone has any tips for travelling with Interferon? I’...

PT99

•6 years ago

15 Replies

Clopidogrel w/Hydroxyurea

I’m prescribed 1X daily Hydroxyurea for ET. I’m supposed to begin it tomorrow. I’m also now taking the antiplatelet med Clopidogrel. I know it won’t reduce the...

I’m prescribed 1X daily Hydroxyurea for ET. I’m supposed to begin it tomorrow. I...

WileyFrench

•6 years ago

12 Replies

Travel insurance

We are going to France beginning of August for 2 weeks. Do I need health insurance or my EU card ( blue health one ) will cover me just in case? I am ET Jak 2...

We are going to France beginning of August for 2 weeks. Do I need health insura...

Elab

•6 years ago

4 Replies

Holiday Insurance

I was diagnosed with ET 3 years ago, and it has been well controlled until recently. I’ve felt like I have flu and have had bouts of diarrhoea and feeling very...

I was diagnosed with ET 3 years ago, and it has been well controlled until recen...

janwh

•6 years ago

5 Replies

Newly diagnosed with ET

Hi, I was diagnosed with ET 8 weeks ago, but when the Drs looked back at my blood tests, the platelets had been high since 2003. It's good to be here, and find...

Hi, I was diagnosed with ET 8 weeks ago, but when the Drs looked back at my bloo...

Lemon123

•6 years ago

29 Replies

Blood cancer

Is ET cancer or not?

kp27kathleen

•6 years ago

21 Replies

MPN Reseach Foundation site : worth knowing about

Hi This is a llnk to the MPN Reseach Foundation website http://www.mpnresearchfoundation.org/Understanding-MPNs Its going from strength to strength, and is...

Hi This is a llnk to the MPN Reseach Foundation website http://www.mpnresearchf...

Rachelthepotter

•6 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2018

Itching/pruritis as a side effect of Pegasys

Prior To Being Diagnosed With ET.

Mutations & mpns.

Prof Harrison on MF

SYMPTOMS OF PRIMARY POLYCYTHAEMIA

Disposal of unused Pegasys Interferon

Pomegranate Juice and Turmeric.....and Anagrelide!

Hot. Hot. Hot. And stressed.

Hair loss and hydroxy

Pegasus interferon and chronic sore throat

Anagrelide

Stress and fear

Having my first BMB next Tuesday!

MPN Research Foundation - new Stem CellTransplant Timing Tool for MPN Patients

Stem Cell Transplants

Met someone with ET!

and it was all going so well...........

Fluid around ankles

Can the food you eat increase platelets

Flu Jab

Just took first hydroxy

Grapefruit Juice and Interferon

To hydroxy or not to hydroxy

Keeping Interferon cool whilst travelling

Clopidogrel w/Hydroxyurea

Travel insurance

Holiday Insurance

Newly diagnosed with ET

Blood cancer

MPN Reseach Foundation site : worth knowing about

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive