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MPN Voice

10,410 members • 14,354 posts

All posts for February 2017

Echinacea while on HU? Can we take?

Are we allowed to take this herbal supplement? It is contraindicated with auto immune disorders.

Are we allowed to take this herbal supplement? It is contraindicated with auto i...

DH65

•7 years ago

5 Replies

Breathlessness and Hydroxyurea

I have been on Hydroxyurea for PV for 3 years or so, and have now developed marked breathlessness which is beginning to get problematic. I am having cardiac...

I have been on Hydroxyurea for PV for 3 years or so, and have now developed mark...

lucieboo

•7 years ago

32 Replies

Does anyone have any info whether Interferon is contraindicated if you have a history of PE or other thrombolytic event ?

Hi I was diagnosed with Pv in September 2016. My platelets have constantly been rising -They are now 1,300,000 My haematologist commenced me on anagrelide 4...

Hi I was diagnosed with Pv in September 2016. My platelets have constantly been...

Dianne-Guisborough

•7 years ago

9 Replies

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Not sure what to do, or if I should be worrying.

Hi there, I haven't been diagnosed with anything but have been sick for over a year with various symptoms, mostly pain in head, chest and abdomen. Also a lot...

Hi there, I haven't been diagnosed with anything but have been sick for over a ...

DanCole3

•7 years ago

6 Replies

New to group - coming to terms with diagnosis

Hi all, I've recently been diagnosed with ET (awaiting Bone marrow results to confirm) JAK2 positive and taking daily aspirin. Im a 30 year old female and...

Hi all, I've recently been diagnosed with ET (awaiting Bone marrow results to co...

ET30

•7 years ago

14 Replies

In My Dreams . . . . .

Hi Friends. . . .I'd like to tell you a story You might think tis all Jackanory It's about who goes on in my head When fast asleep in my bed I'm afraid it...

Hi Friends. . . .I'd like to tell you a story You might think tis all Jackanory...

JediReject

•7 years ago

16 Replies

1st haematology appointment tomorrow, what to expect?

The doctor referred me to haematology for having thick blood. My first appointment (uk) is tomorrow, what happens please? Would I get confirmation of a...

The doctor referred me to haematology for having thick blood. My first appointme...

Emeraldpv

•7 years ago

8 Replies

Unbearable night cramps in legs/bone pain after upping interferon - related?

Hi everyone, I'm new here. I started on 90mcg of Peg. Interferon a month ago. No side effects. Last week they upped my dosage to 180mcg/weekly. Initially I was...

Hi everyone, I'm new here. I started on 90mcg of Peg. Interferon a month ago. No...

SharonIsHopeful

•7 years ago

36 Replies

ET and Sun Exposure

Hi, I was diagnosed in October 2015 with ET (Jak2 negative). I am now on 2 x 500mg of Hydroxycarbamide and baby aspirin which seems to have stabilized my...

Hi, I was diagnosed in October 2015 with ET (Jak2 negative). I am now on 2 x 500...

retromicky

•7 years ago

8 Replies

Protecting oneself from the sun

In the hope that the UK will have a proper summer this year and remembering that those of us taking hydroxy have to ensure we are protected from the sun, can...

In the hope that the UK will have a proper summer this year and remembering that...

ChrisAnnSen

•7 years ago

14 Replies

Aspirin

I have noticed recently that quite a few of us are taking enteric coated aspirin. I have been on dispersible aspirin for 5 years now. I have always had a...

I have noticed recently that quite a few of us are taking enteric coated aspirin...

jodary

•7 years ago

15 Replies

Consultant

Morning all Can anyone advise where I can find a specialist list. My husband is unsure that he is receiving the best course of treatment. Thanks

Morning all Can anyone advise where I can find a specialist list. My husband is ...

charlie98

•7 years ago

7 Replies

Vonn65

Hi I have just been diagnosed with essential thrombocythaemia and am taking hydroxycarbamide a little concerned about side effects .

Hi I have just been diagnosed with essential thrombocythaemia and am taking hyd...

Vonn65

•7 years ago

15 Replies

Bone marrow biopsy

I'm due to have a bone marrow biopsy in a few weeks, please could anybody tell me how long it takes to get over ,as we are in the middle of moving house?

I'm due to have a bone marrow biopsy in a few weeks, please could anybody tell m...

Cheryl47

•7 years ago

18 Replies

Medic Alert Bracelet

Hi All Just wondered if any of you wear a medic alert bracelet, just in case of an emergency when you wouldn't be able to tell anyone about your conditions,...

Hi All Just wondered if any of you wear a medic alert bracelet, just in case of ...

jodary

•7 years ago

16 Replies

Succesful Critical Illness Claim - Thank you

Hi everyone Found out today that my claim had been succesful and just wanted to thank everyone who kindly offered advice and also took the time to email...

Hi everyone Found out today that my claim had been succesful and just wanted to ...

Janlol

•7 years ago

1 Reply

New

Hello I'm new to this, I was diagnosed last month with ET routine blood test, consultant started me on hydroxyamide unfortunately was only on it for 3 weeks I...

Hello I'm new to this, I was diagnosed last month with ET routine blood test, co...

linphy

•7 years ago

8 Replies

PV getting attention

Good morning all. As you all know I never post but always read. I have been a fan of General Hospital for over 30 years. This is a soap opera in the US....

Good morning all. As you all know I never post but always read. I have been a fa...

Kinsalelady

•7 years ago

8 Replies

Incredible Medicine: Dr Weston's Casebook

Anyone watching it? Amazing to see that there are many people coping with rare conditions.

Anyone watching it? Amazing to see that there are many people coping with rare c...

MarkD6701

•7 years ago

2 Replies

New here -diagnosed ET 2012

Hello I was diagnosed with ET in 2012 a BMB confirmed this. I take 1000 Hydroxy Urea a day with aspirin. Over the last year I've had bad pain in my feet...

Hello I was diagnosed with ET in 2012 a BMB confirmed this. I take 1000 Hydroxy...

JudyN

•7 years ago

6 Replies

Second opinion

Hi I know I have written on here before about seeing another consultant for a second opinion but I am now seriously looking into it. I was wondering if Maz...

Hi I know I have written on here before about seeing another consultant for a se...

Skye333

•7 years ago

18 Replies

New Member

Hi I am new to this MPN group, I live in Australia. I was dx in 2004 with ET with platelets counts of only 853 & put on Hydrea & aspirin far too early as I...

Hi I am new to this MPN group, I live in Australia. I was dx in 2004 with ET w...

Pablo1

•7 years ago

6 Replies

Feeling worried

Hi i just had an interim blood test fbc and renal tests and my platelets creeping back up and my MCV high 99.1 im very upset and worried , i left message at...

Hi i just had an interim blood test fbc and renal tests and my platelets creepin...

catwomen2015

•7 years ago

10 Replies

Prescription charges

good morning, I hope the sun is shining where's ever you are! This is my first post on here , I recently joined after going through a bit of a blip. I have ET...

good morning, I hope the sun is shining where's ever you are! This is my first p...

Nickyanne

•7 years ago

6 Replies

Roferon-A question

I have been using Roferon-A since early 2013, injecting 3miu 7 times a week for most of that time. It's currently not doing a fantastic job of controlling my...

I have been using Roferon-A since early 2013, injecting 3miu 7 times a week for ...

Jo_L

•7 years ago

2 Replies

Essential thrombocythaemia with jak2positive..

I need some help.. my mum has been diagnosed with ET jak2 positive, she is 65. Is there anyone out there that is jak2 positive that could give me some more...

I need some help.. my mum has been diagnosed with ET jak2 positive, she is 65. ...

Red78

•7 years ago

9 Replies

Critical illness

2nd part of my critical illness quotes

tracey13

•7 years ago

Be the first to reply

Critical illness

This may be useful.

tracey13

•7 years ago

3 Replies

Interferon

Could anyone advise me about pains with Interferon. My husband has been on it for 3 months, my observations are that it's pretty horrendous. He is...

Could anyone advise me about pains with Interferon. My husband has been on it f...

charlie98

•7 years ago

5 Replies

HCT improving ...how ?

So recently I've had a fairly odd experience. I've got PV and just have aspirin and venesection to treat and at my last two blood tests my HCT has actually...

So recently I've had a fairly odd experience. I've got PV and just have aspirin ...

Chris1919

•7 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2017

Echinacea while on HU? Can we take?

Breathlessness and Hydroxyurea

Does anyone have any info whether Interferon is contraindicated if you have a history of PE or other thrombolytic event ?

Not sure what to do, or if I should be worrying.

New to group - coming to terms with diagnosis

In My Dreams . . . . .

1st haematology appointment tomorrow, what to expect?

Unbearable night cramps in legs/bone pain after upping interferon - related?

ET and Sun Exposure

Protecting oneself from the sun

Aspirin

Consultant

Vonn65

Bone marrow biopsy

Medic Alert Bracelet

Succesful Critical Illness Claim - Thank you

New

PV getting attention

Incredible Medicine: Dr Weston's Casebook

New here -diagnosed ET 2012

Second opinion

New Member

Feeling worried

Prescription charges

Roferon-A question

Essential thrombocythaemia with jak2positive..

Critical illness

Critical illness

Interferon

HCT improving ...how ?

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