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MPN Voice

10,529 members • 14,546 posts

All posts for October 2017

Hydroxycarbamide Side Effects

I was diagnosed with ET last month and am on low dose Aspirin and Hydroxycarbamide 500mgs. Have only been on the Hydroxy for 3 days and am pleasantly surprised...

I was diagnosed with ET last month and am on low dose Aspirin and Hydroxycarbami...

SDJD

•7 years ago

6 Replies

Pvr morning into myolofibrosis

I went to the haemo for my 3 monthly check and he gave me a timeline of 3 - 4 years then it turns to myelo fibrosis and then 2-5years for death and he said we...

I went to the haemo for my 3 monthly check and he gave me a timeline of 3 - 4 ye...

tracey1003

•7 years ago

14 Replies

Tongue

My husband has told me on more than one occasion that I should "bite my tongue" but he didn't mean it literally !! However, since being diagnosed with ET 9...

My husband has told me on more than one occasion that I should "bite my tongue" ...

Chris3875

•7 years ago

2 Replies

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Persistent Cough

Hi all I just wanted to ask if anyone has suffered from a very long term cough and if it may be at all related to my mpn? I am 38 and have PV jak2+. I'm...

Hi all I just wanted to ask if anyone has suffered from a very long term cough a...

Joerp

•7 years ago

2 Replies

Long time since posting last

Hi my MPN family, It's been a long time since I last posted but so much has been happening. Firstly, my 93 year old mum, who lived with us, had a stroke. It...

Hi my MPN family, It's been a long time since I last posted but so much has been...

jillydabrat

•7 years ago

9 Replies

Rash on foot

Hi I have now been diagnosed with PV JAK2+, previously diagnosed as ET. I am taking Hydra 11 x 500 mg tablets a week, plus daily 75mg Clopidogrel with a...

Hi I have now been diagnosed with PV JAK2+, previously diagnosed as ET. I am tak...

DavidBates

•7 years ago

7 Replies

Falling

Friday I had my third significant fall in 10 weeks, and this was head first down the stairs. I'm really banged up and, of course, bruised. The only ET symptom...

Friday I had my third significant fall in 10 weeks, and this was head first down...

MaryELWoods

•7 years ago

8 Replies

Pvr

Hubby diagnosed 14 months ago with PV.on aspirin and hydrea.never in good form and has given up on all the ings we used to do.I work full time and he says I...

Hubby diagnosed 14 months ago with PV.on aspirin and hydrea.never in good form a...

Ursy1955

•7 years ago

8 Replies

Fatigue, how I cured mine

Hi all New to this forum, My name is Peter and live in the north east of the UK and have ET. I was diagnosed 6 years ago and had all the symptoms of fatigue,...

Hi all New to this forum, My name is Peter and live in the north east of the UK ...

flfair

•7 years ago

6 Replies

Just love this 😊

Happy Friday everyone!

Sand-Dancer

•7 years ago

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MPN Information book from MPN Research Foundation

Hi, I received an email from the MPN research foundation which included a link to this free book so thought I would share. Best wishes, Frances...

Hi, I received an email from the MPN research foundation which included a link ...

francesb

•7 years ago

4 Replies

Restless legs

Hello, I don't post very often but I always read the messages.I was very interested to see all the posts relating to restless legs - something I had never...

Hello, I don't post very often but I always read the messages.I was very interes...

Amacp

•7 years ago

8 Replies

PEGASYS Interferon and High BP

Just started on PEGASYS Interferon and my BP has gone up.... Thoughts?

shiftzz

•7 years ago

2 Replies

Drinking water

I know this is a small point but drinking 2-3litres of water a day is quite a lot maybe 12-15 glasses of water which I find a bit of a chore but I have found...

I know this is a small point but drinking 2-3litres of water a day is quite a lo...

Eoin

•7 years ago

9 Replies

Just been told I am anemic

Hi all out there. Not been active for weeks now. Can anyone tell me how I can reverse my anemia. Waiting to hear back for an appointment with my Consultant....

Hi all out there. Not been active for weeks now. Can anyone tell me how I can re...

Diam

•7 years ago

8 Replies

Turmeric ok!

Because the various drugs on offer have had rather dire effects on me, following a friend's suggestion after reading a newspaper article about the benefits of...

Because the various drugs on offer have had rather dire effects on me, following...

Tinkerbell13

•7 years ago

27 Replies

What they missed...

I was feeling bad for some time, went for blood tests, they came back and I was told my blood was a little thick, nothing else, no treatment... When I asked...

I was feeling bad for some time, went for blood tests, they came back and I was ...

shiftzz

•7 years ago

5 Replies

Fatigue - stress and negative energy from others

I wonder if any of you find your fatigue is exacerbated by being with people who are negative and off-load to you and stress other than dealing with our MPN....

I wonder if any of you find your fatigue is exacerbated by being with people who...

Garden987

•7 years ago

8 Replies

Bone pain

Hi, I found this which may interest you. The main site pvreporter.com seems to have lots of info and a search facility although I haven't studied it in...

Hi, I found this which may interest you. The main site pvreporter.com seems to ...

francesb

•7 years ago

1 Reply

Blood Test Results Online

Hello, I get my blood test results online now, tests requested by the hospital do not appear there but anything that GP has requested do. Ask your Health...

Hello, I get my blood test results online now, tests requested by the hospital...

Searcher56

•7 years ago

Be the first to reply

HEADACHES & Cefaly

Hi Folks, I've been having many more headaches than in the past and wonder if it's related to my ET. I'm JAK+ and my blood levels are consistently good with...

Hi Folks, I've been having many more headaches than in the past and wonder if it...

katiewalsh

•7 years ago

2 Replies

BLUE BADGE

Hi I have recently been refused a Blue Badge - (I have Osteoarthritis as well as ET) and am about to appeal. My Local Authority have refused my application on...

Hi I have recently been refused a Blue Badge - (I have Osteoarthritis as well as...

Senoritakazza

•7 years ago

14 Replies

Dull ache in upper back near spine..

As I recently got m ET diagnosis after my bone marrow biopsy, jak2 negative, still waiting for CAL R results...I am feeling an occasional stabing n kind of...

As I recently got m ET diagnosis after my bone marrow biopsy, jak2 negative, sti...

mustabshra

•7 years ago

5 Replies

flu jab

I had a I had a flu jab last Saturday and last night I have a terrible night's sleep and now I have flu! I have myelofibrosis and I spoke to my blood nurses I...

I had a I had a flu jab last Saturday and last night I have a terrible night's ...

MichaelS

•7 years ago

12 Replies

Headaches/joint pains worsening?

Morning friends, dont know if you all get these headaches ,more so with MPNs ? like most of us the tiredness and fatigue also ! but even the GP when looking up...

Morning friends, dont know if you all get these headaches ,more so with MPNs ? l...

catwoman2015

•7 years ago

19 Replies

The first 7 months after diagnosis. Feeling better in myself.

Things are going better for me now then they were earlier in the year. I have my bad days and struggle with low energy levels, but on average I have a bit more...

Things are going better for me now then they were earlier in the year. I have my...

stillkicking

•7 years ago

10 Replies

Susan 3025

Wondering why in this country that if you work you get less? My grandson had a job and was on his way to marriage and a new home when he became ill with AML...

Wondering why in this country that if you work you get less? My grandson had a j...

Susan3925

•7 years ago

5 Replies

newly diagnosed with ET and on anagrelide

recently diagnosed with ET.I am on aspirin.and anagrelide 1 mg daily..feeling very stressed and alone.feeling extreme tiredness, sometimes shortness of breath...

recently diagnosed with ET.I am on aspirin.and anagrelide 1 mg daily..feeling ve...

mustabshra

•7 years ago

13 Replies

Lump

I have ET jak2 pos dx two years ago. I have suddenly got a rather large lump under my jaw on the right hand side of my neck/throat area and worried.... it is...

I have ET jak2 pos dx two years ago. I have suddenly got a rather large lump un...

Klys

•7 years ago

4 Replies

Thinking of stopping my chemo

Hi, I've had TERRIBLE bone pain in my shoulder for over a month now. Even doing the simplest thing has me crying out in pain, it even wakes me from a sleep....

Hi, I've had TERRIBLE bone pain in my shoulder for over a month now. Even doing ...

Lainy1

•7 years ago

32 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2017

Hydroxycarbamide Side Effects

Pvr morning into myolofibrosis

Tongue

Persistent Cough

Long time since posting last

Rash on foot

Falling

Pvr

Fatigue, how I cured mine

Just love this 😊

MPN Information book from MPN Research Foundation

Restless legs

PEGASYS Interferon and High BP

Drinking water

Just been told I am anemic

Turmeric ok!

What they missed...

Fatigue - stress and negative energy from others

Bone pain

Blood Test Results Online

HEADACHES & Cefaly

BLUE BADGE

Dull ache in upper back near spine..

flu jab

Headaches/joint pains worsening?

The first 7 months after diagnosis. Feeling better in myself.

Susan 3025

newly diagnosed with ET and on anagrelide

Lump

Thinking of stopping my chemo

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