Posts - MPN Voice | HealthUnlocked

MPN Voice

10,519 members • 14,521 posts

All posts for November 2017

FATIGUE AND DDISABLED DAUGHTER

Went to GP today crying my eyes out because I can no longer cope with this fatigue Whenever she does visit it's a day out for herand finding any sort of carer...

Went to GP today crying my eyes out because I can no longer cope with this fatig...

Garden987

•6 years ago

11 Replies

Diet and fitness

Hi I know there have been a few posts about this recently but I am a bit confused I have had ET for 8 years which is now gradually changing to PV with a high...

Hi I know there have been a few posts about this recently but I am a bit confus...

Margo18

•6 years ago

9 Replies

Drug Therapy - Interferon

Hey, I would love to hear from any PV patients who have had success with interferon? I have had PV for over 8 years nearly 9 and I was able to fight the...

Hey, I would love to hear from any PV patients who have had success with interfe...

Hidden

•7 years ago

25 Replies

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MTHFA Gene Mutation

I have ET (MPL) I also have MTHFA which I gather is unrelated to ET, I wonder if it is unrelated, has anyone else got MTHFA mutation. MTHFA is the process of...

I have ET (MPL) I also have MTHFA which I gather is unrelated to ET, I wonder if...

Raphael_UK

•7 years ago

2 Replies

Poor NHS Administration

I had tests for MPN at Hospital following a mild stroke due to high platelets. I had test for JAK2, MPL, PV, Factor v Leiden and lots more. I was told I would...

I had tests for MPN at Hospital following a mild stroke due to high platelets. ...

Raphael_UK

•7 years ago

18 Replies

MPN Diet and Exercise Webinar tomorrow!

We are so excited for tomorrow’s live broadcast for MPN patients and family members about diet and exercise We will be joined by MF patient, Julia Olff from...

We are so excited for tomorrow’s live broadcast for MPN patients and family memb...

tclementi

•7 years ago

12 Replies

Blood Books for recording and sharing blood results and medication - examples wanted!

Hi The idea of an ongoing single "Blood Book" in which all hospitals and GPs providing care for an MPN patient can record blood test results and...

Hi The idea of an ongoing single "Blood Book" in which all hospitals and GPs ...

Rachelthepotter

•7 years ago

26 Replies

Ace inhibitors and Hydroxy

Does anyone have experience of using ACE inhibitors alongside hydroxycarbamide and low dose aspirin? I have been taking Amlodipine to control blood pressure...

Does anyone have experience of using ACE inhibitors alongside hydroxycarbamide a...

Ovingite

•7 years ago

9 Replies

Discussion with haemo. Nurse re fatigue

Hi everyone. Some interesting revelations re fatigue. Have just spoken to my haemo. Nurse because my haemotologist has said that my fatigue is not connected...

Hi everyone. Some interesting revelations re fatigue. Have just spoken to my h...

Garden987

•7 years ago

19 Replies

Past numbers

My medical records etc are now available online. So I checked some of my old results.. 14 Nov 2014 vvvv (Admin/Clinical Support Access Role) Medical...

My medical records etc are now available online. So I checked some of my old re...

shiftzz

•7 years ago

8 Replies

Good appointment with my Heamotologist

Saw my Consultant today and feel it went well. He spent ages with me and I feel that I’m in good hands. He’s going to arrange for another scan of my spleen,...

Saw my Consultant today and feel it went well. He spent ages with me and I feel ...

Dora1971

•7 years ago

5 Replies

Newbie

Hello everyone, I've just joined the site. I'm 61 and have had ET for about 20 yesrs. It was first detected when I had blood tests before some surgery. It has...

Hello everyone, I've just joined the site. I'm 61 and have had ET for about 20 y...

hall2

•7 years ago

18 Replies

ET, and prognosis

I saw my hematologist in September and asked him what my prognosis was (I'm taking hydroxy one a day and this keeps my platelets at a good level). He said...

I saw my hematologist in September and asked him what my prognosis was (I'm taki...

jeanr

•7 years ago

8 Replies

Haem appointment disappointing

Hello everybody I just want to vent a little, hope that's ok? I have ET/Jak2 and on InterferonAlpha. Went to Haem this week and although the interferon has...

Hello everybody I just want to vent a little, hope that's ok? I have ET/Jak2 an...

Vennie

•7 years ago

2 Replies

New Beginnings Spain

well been a while so thought id update. moved to a house a bought in Spain last month with Dee my new lady.. well 18months thought better make it official. my...

well been a while so thought id update. moved to a house a bought in Spain last ...

Hughesf

•7 years ago

8 Replies

Do I have Polycythemia Vera?!

Hi guys, My story is still in it’s infancy but I have been feeling light-headed & I felt my vision was not quite as good as it has been earlier this year (I...

Hi guys, My story is still in it’s infancy but I have been feeling light-headed ...

ScotlandTheBrave

•7 years ago

2 Replies

Explain the fatigue

I am always so fatigued; that's why I kept going to the doctor and why she finally did a CBC and found my PV (JAK2+). My labs are almost all normal after only...

I am always so fatigued; that's why I kept going to the doctor and why she final...

MaryELWoods

•7 years ago

11 Replies

ET & mild MF (negative for all gene mutations)

Hi All, I was wondering if anyone else on our forum is not only triple negative, but has been tested negative for all known gene mutations. If you have been I...

Hi All, I was wondering if anyone else on our forum is not only triple negative,...

Cmg5935

•7 years ago

15 Replies

Occupational and Chemical Exposure that may cause MPNs, Along with Familial Clustering

Hope you find the article informative and learn something new -...

PVReporter

•7 years ago

5 Replies

PV JAK2

I was diagnosed in April & have had regular venesections since then, I am now iron deficient & it's looking like Hydroxycarbamide next. However I am seeking...

I was diagnosed in April & have had regular venesections since then, I am now ir...

Sueworthington

•7 years ago

3 Replies

Cramps, stretching and Vibro Plate

I started off getting cramp in my calf’s at night so stretched before bed. This appeared to move the cramping to the muscle running along my shin. For last few...

I started off getting cramp in my calf’s at night so stretched before bed. This ...

Paul123456

•7 years ago

3 Replies

Interferon how quick

Been on Pega for about a month, plus reduced Hydro, but my hct is going up.. Does anyone know how long Interferon takes to get some results? Venesection next...

Been on Pega for about a month, plus reduced Hydro, but my hct is going up.. Do...

shiftzz

•7 years ago

9 Replies

Travel insurance.

I was very surprised. Diagnosed PV more than a year ago. I qualify for free EU travel insurance. No penalties for being on meds for PV. Nationwide flex...

I was very surprised. Diagnosed PV more than a year ago. I qualify for free EU ...

EleanorPV

•7 years ago

2 Replies

I'm new here.....

Hi I'm Rob and I live in Hereford, England. I was diagnosed with PV in October. I've already had three venesections and I am taking my daily asprin. Very...

Hi I'm Rob and I live in Hereford, England. I was diagnosed with PV in October....

robcaduk

•7 years ago

7 Replies

Anyone else noticed finger splits on rux

For the past few months been getting a number of finger splits which are both trivial and painful. can make getting pills out of tight packaging very...

For the past few months been getting a number of finger splits which are both tr...

skodaguy

•7 years ago

1 Reply

New to this site

Hi, I'm 57. I was diagnosed with Jak2 PV last July and I can honesty say, I've never felt particularly well for around 20 months now. My hematocrit level was...

Hi, I'm 57. I was diagnosed with Jak2 PV last July and I can honesty say, I've n...

Hidden

•7 years ago

17 Replies

Has anyone else experienced ridiculous waste in the NHS? (this is relevant to us all - read on)

This is my kitchen table, measuring 8ft x3ft and covered in unused sealed dressings left by district nurses who treated my mother's leg following a carcinoma....

This is my kitchen table, measuring 8ft x3ft and covered in unused sealed dressi...

Loubprv

Volunteer•7 years ago

13 Replies

No improvement in first month at all.

I had my 2nd hospital visit yesterday to find out that 500mg of hydroxycarbamide a day has not lowered my platelet count one bit. From today I have to take 1g...

I had my 2nd hospital visit yesterday to find out that 500mg of hydroxycarbamide...

Mica11

•7 years ago

29 Replies

Bruises and aching arm after venesection.

Hello all, in May of this year my diagnosis was changed from ET to PV after the consultant notice high red blood cell count. My haematocrit was 49. I was sent...

Hello all, in May of this year my diagnosis was changed from ET to PV after the ...

RobPV

•7 years ago

4 Replies

First month of the rest of my life done!

And my platlet count has dropped to 296 from over 840. Has anyone else ever had such dramatic results? I take 81mg aspirin and 1 mg folic acid once a day,...

And my platlet count has dropped to 296 from over 840. Has anyone else ever had ...

Jacki_Clayton

•7 years ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2017

FATIGUE AND DDISABLED DAUGHTER

Diet and fitness

Drug Therapy - Interferon

MTHFA Gene Mutation

Poor NHS Administration

MPN Diet and Exercise Webinar tomorrow!

Blood Books for recording and sharing blood results and medication - examples wanted!

Ace inhibitors and Hydroxy

Discussion with haemo. Nurse re fatigue

Past numbers

Good appointment with my Heamotologist

Newbie

ET, and prognosis

Haem appointment disappointing

New Beginnings Spain

Do I have Polycythemia Vera?!

Explain the fatigue

ET & mild MF (negative for all gene mutations)

Occupational and Chemical Exposure that may cause MPNs, Along with Familial Clustering

PV JAK2

Cramps, stretching and Vibro Plate

Interferon how quick

Travel insurance.

I'm new here.....

Anyone else noticed finger splits on rux

New to this site

Has anyone else experienced ridiculous waste in the NHS? (this is relevant to us all - read on)

No improvement in first month at all.

Bruises and aching arm after venesection.

First month of the rest of my life done!

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