Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,126 posts

All posts for June 2018

Depression

MPN community, I so appreciate your support. I’m JAK2+, PV since Aug 2017; was on Pegasys now taking a break due to “autoimmune syndrome.” My liver and thyroid...

MPN community, I so appreciate your support. I’m JAK2+, PV since Aug 2017; was o...

MaryELWoods

•6 years ago

24 Replies

Videos from the Living with MPNs Day 18 November 2017 are now available to view

We now have our own YouTube channel where you can find videos of leading MPN experts from around the world talking about living with MPNs; trials; medications;...

We now have our own YouTube channel where you can find videos of leading MPN exp...

Mazcd

Partner•6 years ago

3 Replies

Fatigue and returning to work post new hip

Dear all I'm just wondering if anyone has any links to articles on fatigue with MPN- PV in specific. I'm 5 weeks post op from having my new hip and that's gone...

Dear all I'm just wondering if anyone has any links to articles on fatigue with ...

Heidi-W

•6 years ago

13 Replies

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Injecting Clexane in other parts of the body?

Hi All, I was taken off warfarin at Easter as my liver was playing up a bit. Since then I've been injecting clexane into my stomach. However, it's getting a...

Hi All, I was taken off warfarin at Easter as my liver was playing up a bit. Sin...

MarkD6701

•6 years ago

2 Replies

Blood test results (in French) what do they mean?

These are from Monday, my wife had a splenectomy five weeks ago after it ruptured due to a minor fall and nearly died after bleeding 3 litres internally while...

These are from Monday, my wife had a splenectomy five weeks ago after it rupture...

jointpain

•6 years ago

5 Replies

Another dry tap

Hi All, Visited my haematologist to get the results of a recent BMB. It has been 20 years since my last one. Had a BMB in 96 at diagnosis time and another in...

Hi All, Visited my haematologist to get the results of a recent BMB. It has been...

Simon96

•6 years ago

4 Replies

ET

58 years old diagnosed with ET about 15 years ago only on aspirin - appreciate all the posts, things more clear now why I’ve lived with fatigue, headaches,...

58 years old diagnosed with ET about 15 years ago only on aspirin - appreciate a...

Chuck309

•6 years ago

2 Replies

Dizzy spells

ET jak2 pos few dizzy spells could my counts be dropping too low as we're normal in April for 1st time in a year? Just a little worried as go on hol Sat TIA

ET jak2 pos few dizzy spells could my counts be dropping too low as we're normal...

tina6

•6 years ago

1 Reply

Getting used to Rux

Well I started on the Ruxilitinib on Monday. 20mg twice a day. I am having waves of fatigue - generally if I sit down for an hour they pass. I was tired before...

Well I started on the Ruxilitinib on Monday. 20mg twice a day. I am having waves...

Graham7694

•6 years ago

7 Replies

Megan95 why you sending me sex spam????

Just got a message from Megan95. It's a sextortion spam. Don't click any links she sends, only joined HU yesterday no idea how she managed to even message me.

Just got a message from Megan95. It's a sextortion spam. Don't click any links s...

Pimlico

•6 years ago

5 Replies

Who's the youngest?

I'm 37. How old are you?

lsharp10uk

•6 years ago

23 Replies

Critical Illness Claim - ET

Critical Illness Claim I'm 37 and recently been diagnosed with ET. I think I took my insurance policy out in 2007/2008. Do you think I will be able to make a...

Critical Illness Claim I'm 37 and recently been diagnosed with ET. I think I too...

lsharp10uk

•6 years ago

4 Replies

Liquid chemo

I have almost lost my voice and now squeak like a little mouse. Saw my consultant today (handy that I work with her) did all the usual bloods throat swab....

I have almost lost my voice and now squeak like a little mouse. Saw my consultan...

Lainy1

•6 years ago

4 Replies

Platelets

What sort of platelet levels would warrant further investigation?

Hanneesweedie

•6 years ago

2 Replies

Blood results

Hi, was wondering if there's any doctors on here that would be prepared to take a look at my blood results. I've inputted them into a spreadsheet to show the...

Hi, was wondering if there's any doctors on here that would be prepared to take ...

Hanneesweedie

•6 years ago

1 Reply

Chest infection and cold !

I am just getting over the most horrendous chest infection and cold. The worst one I’ve ever had. Am I right in thinking that this is because of taking...

I am just getting over the most horrendous chest infection and cold. The worst o...

Juliet46

•6 years ago

17 Replies

Hydroxycarbamide and platelets

Morning everyone. I have PRV Jak 2 + and am due to start on hydroxy next month to control my HCT as it's always raised and regular venesections are causing low...

Morning everyone. I have PRV Jak 2 + and am due to start on hydroxy next month t...

Kari1961

•6 years ago

4 Replies

Newcaslte Patient Forum?

Hi Everyone, Is anyone going to the Newcastle Patient forum in October, I'm interested to know if there many people locally who have the same or similar...

Hi Everyone, Is anyone going to the Newcastle Patient forum in October, I'm inte...

P-O-T-S

•6 years ago

20 Replies

Hydroxycarbamide

Hello everyone just a question I have ET, I restarted Hydroxycarbamide 2 weeks ago I only take it Monday to Friday, I was diagnosed last year but it didn't...

Hello everyone just a question I have ET, I restarted Hydroxycarbamide 2 weeks a...

linphy

•6 years ago

3 Replies

Interesting read!

Structure of protein pair provides a blueprint for future drugs Donate https://www.wehi.edu.au/news/structure-protein-pair-provides-blueprint-future-drugs

Structure of protein pair provides a blueprint for future drugs Donate https://w...

P-O-T-S

•6 years ago

11 Replies

Hydroxy, Midgie and Mozzie bites

This is my first summer since diagnosis and I was just curious having always been breakfast, lunch and dinner to the voracious little Scottish midgie and the...

This is my first summer since diagnosis and I was just curious having always bee...

Mica11

•6 years ago

22 Replies

New System

Hi everyone, some time ago I posted about a new system that was being trialed at my hospital. blood taken by GP them telephone consultation a week later, this...

Hi everyone, some time ago I posted about a new system that was being trialed at...

AngiP

•6 years ago

10 Replies

BMB result

I went for my BMB result today and was told that there is a minimal amount of scarring in my bone marrow it's nothing to worry about at the moment! Platelet...

I went for my BMB result today and was told that there is a minimal amount of sc...

hall2

•6 years ago

14 Replies

Bemer, Moringa, HGH..Have you tried them, did it work?

I'm 58 and last year was diagnosed with PV JAK2 Positive. I'm currently at a venesection about every 6-8 weeks and 500 mg Hydroxy. I am pre-diabetic as well...

I'm 58 and last year was diagnosed with PV JAK2 Positive. I'm currently at a ven...

Johnsb

•6 years ago

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Introducing myself...

I've been lurking a while and I'd like to say hi to you all! My name is Jenny, aged 49, from Essex, UK. I've had elevated platelets (around 670) for a year....

I've been lurking a while and I'd like to say hi to you all! My name is Jenny, a...

jenster68

•6 years ago

9 Replies

Lynn 30

I haven't been posting for a long time. I was diagnosed with High risk myelofibrosis/low risk Mds-5q last September.I have been on Rux until April ,but have...

I haven't been posting for a long time. I was diagnosed with High risk myelofibr...

champ30

•6 years ago

7 Replies

LOWER ARM RED BLOTCHES

I am male, 74 been diagnosed with ET, JAK2+ 6 years ago, platelets last count 434. Taking weekly cycle 1,000mg hydrea 4 days, 1,500mg 3 days. I had a gripe...

I am male, 74 been diagnosed with ET, JAK2+ 6 years ago, platelets last count 4...

ashby6708

•6 years ago

2 Replies

Ramblings on Pre-PMF and early stage MF

There have been multiple threads recently on Pre-PMF and early stage MF. My very limited understanding is that Pre-MF can be hard to distinguish, even via BMB,...

There have been multiple threads recently on Pre-PMF and early stage MF. My very...

Paul123456

•6 years ago

10 Replies

Back spasms and PV - any correlation?

Hi All, I was diagnosed with PV, JAK2+ 3.5 years ago. I have been generally well controlled on aspirin and venesection but I am also on the Givinostat Trial...

Hi All, I was diagnosed with PV, JAK2+ 3.5 years ago. I have been generally wel...

Whatsisname

•6 years ago

3 Replies

Problems at work

Hi everyone, I haven't posted for a while but have been keeping up with everyone's post. I don't know how I feel at the moment. I recently got called in for...

Hi everyone, I haven't posted for a while but have been keeping up with everyon...

Nettie22

•6 years ago

21 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2018

Depression

Videos from the Living with MPNs Day 18 November 2017 are now available to view

Fatigue and returning to work post new hip

Injecting Clexane in other parts of the body?

Blood test results (in French) what do they mean?

Another dry tap

ET

Dizzy spells

Getting used to Rux

Megan95 why you sending me sex spam????

Who's the youngest?

Critical Illness Claim - ET

Liquid chemo

Platelets

Blood results

Chest infection and cold !

Hydroxycarbamide and platelets

Newcaslte Patient Forum?

Hydroxycarbamide

Interesting read!

Hydroxy, Midgie and Mozzie bites

New System

BMB result

Bemer, Moringa, HGH..Have you tried them, did it work?

Introducing myself...

Lynn 30

LOWER ARM RED BLOTCHES

Ramblings on Pre-PMF and early stage MF

Back spasms and PV - any correlation?

Problems at work

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