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MPN Voice

10,437 members • 14,387 posts

All posts for January 2017

Ruxo for mf cost? Nhs?

I have just been diagnosed with mf and have heard about ruxo. Is it helpful from the start? What does it cost if the nhs wont prescribe it?

I have just been diagnosed with mf and have heard about ruxo. Is it helpful fro...

Rachelthepotter

•7 years ago

19 Replies

Mouth sores

Have been on Hydroxy for 2 years now without suffering the dreaded mouth sores but all of a sudden I have had 2 cold sores and now have two very painful mouth...

Have been on Hydroxy for 2 years now without suffering the dreaded mouth sores b...

jillydabrat

•7 years ago

11 Replies

polycythemia vera ???

Hi every one ,Im fady 30 years old My doctor said I highly suggestive polycythemia rubra vera ..Hg 17.1 Hct 49.6 platlets 800 Im very worried about prognosis...

Hi every one ,Im fady 30 years old My doctor said I highly suggestive polycythem...

fady

•7 years ago

15 Replies

Want to take advantage of all our features? Just log in!

This is me!

This is me!!

lizzziep

•7 years ago

10 Replies

Smile

Morning everyone. Does anyone know if MPN charity is on the Amazon smile. Apparently the charity has to register and then we get an app for it. I have bought a...

Morning everyone. Does anyone know if MPN charity is on the Amazon smile. Appare...

Skye333

•7 years ago

4 Replies

Lupus?

Hi recently posted about possible Lupus...tests came back negative which is good,but now being tested for lymphoma...OMG Does anyone have any views regarding...

Hi recently posted about possible Lupus...tests came back negative which is good...

rjw1

•7 years ago

4 Replies

High Blood Pressure

Hi, I have ET and in the last year have changed from Hydrea to Anagrelide as I was having problems taking Hydrea after taking Anagrelide I did have some side...

Hi, I have ET and in the last year have changed from Hydrea to Anagrelide as I w...

Irishmod

•7 years ago

10 Replies

Hi everybody ,,back after knee replacement stay in private hospital ..

I take the trial drug ruxulitnib twice a day ,I have done for 3 years ,I have MPN . We decided to continue throughout my surgery ,. But I stopped clopiterol...

I take the trial drug ruxulitnib twice a day ,I have done for 3 years ,I have MP...

Twinkly

•7 years ago

13 Replies

Side affects or something else ?

Hi all , i have had yet again Second time in 3 weeks a gut upset and very tired ,all my blood tests came back okay , shows no anemia and blood infection back...

Hi all , i have had yet again Second time in 3 weeks a gut upset and very tired ...

Hidden

•7 years ago

10 Replies

Myelofibrosis

I joined this group to inform myself about PV which my husband was diagnosed with 8 years ago. His last haematology appt he was informed he now has...

I joined this group to inform myself about PV which my husband was diagnosed wit...

Marianjones54

•7 years ago

7 Replies

Unlikely to try the real thing!

Hi everyone, Can heartily recommend paying a visit to an iFly centre - great fun! I joined our local U3A last year and far from being a boring old farts club -...

Hi everyone, Can heartily recommend paying a visit to an iFly centre - great fun...

Loubprv

Volunteer•7 years ago

10 Replies

Worried after check up.

Hi my MPN family I went for my 8 week check up with my haemotologist yesterday and my bloods continue to be stable. I told her I had had 2 bouts of sickness...

Hi my MPN family I went for my 8 week check up with my haemotologist yesterday a...

jillydabrat

•7 years ago

15 Replies

Annoying dizzy spells with pv

I've recently been diagnosed with pv I've had so far 7 venesections and my levels seems to be going in the right direction except my playlets which are slowly...

I've recently been diagnosed with pv I've had so far 7 venesections and my level...

Jasbak22

•7 years ago

12 Replies

New Beginnings 2017

As some of you know new beginnings is my start after the end of 2015 New Beginnings is also the name of my narrowboat Which I restored to health in 2016 . 2017...

As some of you know new beginnings is my start after the end of 2015 New Beginni...

Hughesf

•7 years ago

14 Replies

Splenomegaly

Hey, I don't often post these days or have time to read everything but I just wanted to put a quick question out there myself today. Anyone experienced a...

Hey, I don't often post these days or have time to read everything but I just wa...

Hidden

•7 years ago

24 Replies

Veins Tapped, Blood Trapped, White Cells Zapped ! 😎

Hi Folks, , Thought I'd post a pic of yours truly hooked up to my Electric Corporeal Treatment ECP machine last Thursday. The wonders of modern science, it is...

Hi Folks, , Thought I'd post a pic of yours truly hooked up to my Electric Corpo...

JediReject

•7 years ago

39 Replies

I'm new here. Chemicals and cause of ET?

I am an analytical chemist and work with DDT, solvents, endocrine disrupting chemicals, PAHs, pesticides, environmental pollutants, etc. as part of my job. I...

I am an analytical chemist and work with DDT, solvents, endocrine disrupting che...

Lab-Rat

•7 years ago

37 Replies

Apprehensive about returning to work......

Hi everyone I have been off work since October due to 2 splenic infarcts and my recent diagnosis of JAK 2 positive MPN, most likely ET (consultant will not...

Hi everyone I have been off work since October due to 2 splenic infarcts and my ...

Janlol

•7 years ago

6 Replies

Questions and fears

It's Jake again . Soon you will all get to know me as the most nervous 22 year old in the world haha. Okay I should probably stop googling all these sites and...

It's Jake again . Soon you will all get to know me as the most nervous 22 year o...

JW1995

•7 years ago

33 Replies

Red blood cells

What does it mean if your read blood cells are enlarged and are 108?

sand19

•7 years ago

5 Replies

Anyone going to this - MPN Advocacy and Education International are hosting a pediatric MPN event.

in new york this May. its the first of its kind i think, i would absolutely love to go but seen as we are in Ireland the chances are pretty slim.

in new york this May. its the first of its kind i think, i would absolutely love...

kentuckyrain

•7 years ago

4 Replies

RLS

Hi everyone, does anyone suffer with restless leg syndrome? I have had this for a few years but over the last couple of years it has got much worse. I have...

Hi everyone, does anyone suffer with restless leg syndrome? I have had this for ...

Skye333

•7 years ago

16 Replies

Good results

Hi Peeps, just to let you that my visit to see my Haematolagist today was all good. WCC 4.3 Neut 2.1 Hb 148 Haematocrit 44.4 Plt 355 he was really pleased with...

Hi Peeps, just to let you that my visit to see my Haematolagist today was all go...

Superwoman

•7 years ago

8 Replies

cbc blood counts

Just curious if this isn't too nosey what everyone's RBC,Platelet ,and HGB counts were at the time of and before diagnosis . In 2016 my RBC was at 6.12 but...

Just curious if this isn't too nosey what everyone's RBC,Platelet ,and HGB count...

JW1995

•7 years ago

3 Replies

Ulcers

I have had ET for over5 years-treated successfully with Hydroxycarbamide. This last5 monthe=s ,following a fall I got an infection in my foot.All cleared up...

I have had ET for over5 years-treated successfully with Hydroxycarbamide. This l...

bossybo

•7 years ago

6 Replies

L-Theanine with HU ?

Hi Everyone, I feel like I ask the weirdest questions but here goes. A DO, osteopath , put me on L-theanine for anxiety, it makes me feel kind of weird in my...

Hi Everyone, I feel like I ask the weirdest questions but here goes. A DO, osteo...

DH65

•7 years ago

6 Replies

Potential Polycythmia?

Hi everyone my name is Jake and I'm 21 years old. Over the past two years my GPA has mentioned on passing that my RBC is slightly higher then normal and my HGB...

Hi everyone my name is Jake and I'm 21 years old. Over the past two years my GPA...

JW1995

•7 years ago

26 Replies

MF low BP?

Hi Everyone I have MF low risk and generally feeling well. I have some anaemia but holding well. Recently I have been having symptoms which feel lije low BP:...

Hi Everyone I have MF low risk and generally feeling well. I have some anaemia ...

Mrs_Average

•7 years ago

5 Replies

Et

Well platelets have risen to 1000. Staying on asprin for now. Said once they get past 1500 then they may consider further treatment. Because I'm 53 still low...

Well platelets have risen to 1000. Staying on asprin for now. Said once they get...

heathermc

•7 years ago

7 Replies

Feeling hopeful

Hi friends , saw my Heamatolgist yesterday , and he was very pleased with my results ,which in turn made me feel happier ! My platelets down to 409 ! best ever...

Hi friends , saw my Heamatolgist yesterday , and he was very pleased with my res...

Hidden

•7 years ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2017

Ruxo for mf cost? Nhs?

Mouth sores

polycythemia vera ???

This is me!

Smile

Lupus?

High Blood Pressure

Hi everybody ,,back after knee replacement stay in private hospital ..

Side affects or something else ?

Myelofibrosis

Unlikely to try the real thing!

Worried after check up.

Annoying dizzy spells with pv

New Beginnings 2017

Splenomegaly

Veins Tapped, Blood Trapped, White Cells Zapped ! 😎

I'm new here. Chemicals and cause of ET?

Apprehensive about returning to work......

Questions and fears

Red blood cells

Anyone going to this - MPN Advocacy and Education International are hosting a pediatric MPN event.

RLS

Good results

cbc blood counts

Ulcers

L-Theanine with HU ?

Potential Polycythmia?

MF low BP?

Et

Feeling hopeful

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