Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for February 2013

Scottish orphan drugs fund launched.

http://www.bbc.co.uk/news/uk-scotland-21016879

ETphonehome

•12 years ago

6 Replies

Hello Everyone. I would like to know if anyone who has MPD. Have you had any tattoos done since you found out that you have this disorder

komabrat

•12 years ago

5 Replies

Weight Gain - Has anyone experienced this on Hydroxyurea (Hydroxycarbamide)?

I have ET and since starting Hu I have gained 8/10 lbs in weight (it fluctuates). I have been on HU just over 12 months and this has crept on since then. I...

I have ET and since starting Hu I have gained 8/10 lbs in weight (it fluctuates)...

Hidden

•12 years ago

30 Replies

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EBMT Transplant Patient and Family Day

EBMT – European Group for Blood and Marrow Transplantation will be holding a patient and family day on Saturday 6th April 2013 from 9.30 am – 6 pm in The...

EBMT – European Group for Blood and Marrow Transplantation will be holding a pat...

Mazcd

Partner•12 years ago

1 Reply

Wow! Reading through the Q & A make me feel quite NORMAL this evening! My question now is about Clopidogrel....

Although I really would benefit from going to bed (yes it's only 9.55) as I'm tired out...again......I really wanted to know if anyone has suffered any side...

Although I really would benefit from going to bed (yes it's only 9.55) as I'm ti...

Hidden

•12 years ago

2 Replies

Hi everyone. Just joined and hoping to find support in the PV world!

I know it doesn't seem very charitable, but am so relieved to discover others who are suffering with similar 'mysterious' symptoms, such as aching hips and...

I know it doesn't seem very charitable, but am so relieved to discover others wh...

Hidden

•12 years ago

5 Replies

Aching Joints? How many people, with an MPD suffer from aching joints? Following on from an earlier question posed today.

I was diagnosed with ET 16 years ago, and have been taking HU for about half that time. A few years ago I started to suffer hip pain. My GP had me tested for...

I was diagnosed with ET 16 years ago, and have been taking HU for about half tha...

amarylis

•12 years ago

22 Replies

Could people share their experience with DLA application?

I am thinking to apply for DLA. I have been diagnosed with ET since Nov. 11 and being on Hydroxicarbomide among other meds my joints have been affected and I...

I am thinking to apply for DLA. I have been diagnosed with ET since Nov. 11 and ...

light

•12 years ago

8 Replies

Information to patients - Department of Health's Copying Letters policy..

For info - not a question. Several weeks ago, an MPD patient was asking about getting her consultant/nurse at the hospital to give or show her her blood...

For info - not a question. Several weeks ago, an MPD patient was asking about ge...

PVPVPV

•12 years ago

6 Replies

If you live in the North, have you seen the charity 'Bright Red', for blood cancer?

As I'm a runner and triathlete, but also I have PV, my club was sent this link that might interest people on here:...

As I'm a runner and triathlete, but also I have PV, my club was sent this link t...

lizl

•12 years ago

5 Replies

How do you receive results?

Hi Guys, just wondered do you take family with you when you get results of tests? I find that if my hubby is with me it gives me support on the one hand but...

Hi Guys, just wondered do you take family with you when you get results of tests...

Aime

•12 years ago

9 Replies

Brilliant News

Hi everyone, I just wanted to update you all about some brilliant news I received on Friday... I was transferred to The Christie a couple of weeks ago once...

Hi everyone, I just wanted to update you all about some brilliant news I receive...

Jennie_Barnes

•12 years ago

32 Replies

Has anyone using Interferon had a dry red/pink rash on body?

I've had this for over a week now, not sure if its related to PV/Interferon.

NewBloom

•12 years ago

7 Replies

Does anyone know whether having ginger is ok when taking asprin?

I've bought a strong ginger cordial today and after having three tumblers of it as a diluted cordial drink looked on the web and there's evidence of blood...

I've bought a strong ginger cordial today and after having three tumblers of it ...

lizl

•12 years ago

13 Replies

Planning to move to UK

Hello! I live in Latvia (one of the Baltic States). I have ET. I'm planning to move to UK, Manchester and would like to know what do I have to do to get...

Hello! I live in Latvia (one of the Baltic States). I have ET. I'm planning...

Liene

•12 years ago

5 Replies

What is your fatigue like and how does it effect your life ?

I have ET, platelets around 800, on aspirin and am 37 with 2 young kids. Although I don't work full time I walk my dogs for around 1-1 1/2 hrs each day and do...

I have ET, platelets around 800, on aspirin and am 37 with 2 young kids. Althoug...

rubyrubyruby

•12 years ago

25 Replies

Patients' Forums - Cambridge and Newcastle

Cambridge The Cambridge Patients’ forum will take place on Friday 8th March 2013, 3 – 7 pm in: Frank Lee Centre Hexagon Room Addenbrookes Hospital...

Cambridge The Cambridge Patients’ forum will take place on Friday 8th March 2...

Mazcd

Partner•12 years ago

9 Replies

Hi, does everyone have a lot of up and down days?

Hi, does everyone else have a lot of up and down days. I have PV and have to get a ct scan to exclude lymphoma as having night sweats as a new symptom. Last...

Hi, does everyone else have a lot of up and down days. I have PV and have to ge...

Aime

•12 years ago

14 Replies

Hello All - I'm in the UK, & I was diagnosed with PV last August, but suspect I've had it for some years.

I have very few symptoms, but do need to take blood pressure meds, and antacids every day.I'm sure I read on here a while back that as this is considered to be...

I have very few symptoms, but do need to take blood pressure meds, and antacids ...

MistyBlue2

•12 years ago

10 Replies

Hello to everyone. First timer here. Only two weeks into this and on Aspirin and Hydroxycarbamide.

It is all a little confusing so I hope someone can shed a little light. I have critical illness cover but I am unsure whether this condition is covered. Has...

It is all a little confusing so I hope someone can shed a little light. I have c...

glassaddict

•12 years ago

19 Replies

How did I get ET?

I was told by my old doctor that it was his hypothesis that ET was related to people who live in prolonged, high stress lifestyles. He said that when people...

I was told by my old doctor that it was his hypothesis that ET was related to pe...

Val_P

•12 years ago

27 Replies

Occupational Health

I have been referred by my employer to Occupational Health. What can I expect? Please can anyone share their experiences. Many thanks

I have been referred by my employer to Occupational Health. What can I expect? ...

Hidden

•12 years ago

17 Replies

MPN(D) Related Fatigue – MRF – Survey

Fatigue is a big issue with patients who have MPDs, and perhaps worst in patients with myelofibrosis (MF), but it is also present in the majority of people...

Fatigue is a big issue with patients who have MPDs, and perhaps worst in patient...

Mazcd

Partner•12 years ago

12 Replies

what is the difference between secondary and Primary Polycythaemia.

I was recently diagnosed with primary Polycythemia with a Jak2 positive test (July 2012) I HAVE already had 12 lot's of blood taken (12x480ml) off and I am...

I was recently diagnosed with primary Polycythemia with a Jak2 positive test (J...

StanM

•12 years ago

14 Replies

Anyone had any problems with employer after they were diagnosed?

I was diagnosed Oct 2012, My employer told me they could no longer afford me due to my illness(PV/ET) they've attempted to change my contract and during...

I was diagnosed Oct 2012, My employer told me they could no longer afford me due...

NewBloom

•12 years ago

12 Replies

Starting interferon soon - can anyone share their experiences please?

I am now officially part of the MAJIC trial but was allocated best available therapy rather than ruxolitinib. However, because I am suffering horrendous mouth...

I am now officially part of the MAJIC trial but was allocated best available the...

Jo_L

•12 years ago

13 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2013

Scottish orphan drugs fund launched.

Hello Everyone. I would like to know if anyone who has MPD. Have you had any tattoos done since you found out that you have this disorder

Weight Gain - Has anyone experienced this on Hydroxyurea (Hydroxycarbamide)?

EBMT Transplant Patient and Family Day

Wow! Reading through the Q & A make me feel quite NORMAL this evening! My question now is about Clopidogrel....

Hi everyone. Just joined and hoping to find support in the PV world!

Aching Joints? How many people, with an MPD suffer from aching joints? Following on from an earlier question posed today.

Could people share their experience with DLA application?

Information to patients - Department of Health's Copying Letters policy..

If you live in the North, have you seen the charity 'Bright Red', for blood cancer?

How do you receive results?

Brilliant News

Has anyone using Interferon had a dry red/pink rash on body?

Does anyone know whether having ginger is ok when taking asprin?

Planning to move to UK

What is your fatigue like and how does it effect your life ?

Patients' Forums - Cambridge and Newcastle

Hi, does everyone have a lot of up and down days?

Hello All - I'm in the UK, & I was diagnosed with PV last August, but suspect I've had it for some years.

Hello to everyone. First timer here. Only two weeks into this and on Aspirin and Hydroxycarbamide.

How did I get ET?

Occupational Health

MPN(D) Related Fatigue – MRF – Survey

what is the difference between secondary and Primary Polycythaemia.

Anyone had any problems with employer after they were diagnosed?

Starting interferon soon - can anyone share their experiences please?

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