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MPN Voice

10,445 members • 14,398 posts

All posts for March 2017

PNH

PNH testing tomorrow following episodes of tea-colored urine. Paroxysmal Nocturnal Hemoglobinuria experience anyone?

PNH testing tomorrow following episodes of tea-colored urine. Paroxysmal Noctur...

Jerrymohler

•7 years ago

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I'M RELATIVELY NEW HERE!

My first post as I was only diagnosed late December 2016 with PVJAK2. I have been reading all your posts with great interest and have found answers to many of...

My first post as I was only diagnosed late December 2016 with PVJAK2. I have be...

Maggie-ol

•7 years ago

6 Replies

Essential Thrombocythemia

Hi, I'm Wilma and I have Essential Thrombocythemia I was diagnosed in 2013. I still don't know very much about this disease. I know I sweat a lot. Get hot...

Hi, I'm Wilma and I have Essential Thrombocythemia I was diagnosed in 2013. I ...

Wilma66

•7 years ago

7 Replies

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Enlarged spleen

Hello. I was diagnosed with MPN 8 years ago. I'm jak2 and have symptoms of both PV and ET. I take hydroxycarbamide and asprin. Like many of us i have an...

Hello. I was diagnosed with MPN 8 years ago. I'm jak2 and have symptoms of both ...

Rich50

•7 years ago

6 Replies

Nerve damage

Hi just wondering if anyone has been told they have nerve damage from taking Hydroxy ?

Hi just wondering if anyone has been told they have nerve damage from taking Hyd...

Benjamin12

•7 years ago

4 Replies

Positive dengue in dwngue duo but has high platelets

Hello my son has high platelet he is only ten years old he was test dengue duo and he is positive but the doctors says he has 800 platelets he was cobfined...

Hello my son has high platelet he is only ten years old he was test dengue duo ...

Eses

•7 years ago

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Need some help preparing for my next visit to see the hematologist please

Hi everyone, Just wondering if I can get some tips for my next visit to see my hematologist. I've been having regular venusections almost one every 2 weeks for...

Hi everyone, Just wondering if I can get some tips for my next visit to see my h...

James1731

•7 years ago

4 Replies

Hi Chris

Haven't seen much posting from you of late so hope things are progressing in the right direction. On a personal side my Jakavi was reduced but that resulted in...

Haven't seen much posting from you of late so hope things are progressing in the...

crapaud

•7 years ago

7 Replies

Newly diagnosed with PV

Hello everyone! I was diagnosed with PV last week following a JAK2 test in hospital 7 weeks ago when I was admitted with a blood clot in the brain (they also...

Hello everyone! I was diagnosed with PV last week following a JAK2 test in hospi...

RosemaryHarper

•7 years ago

8 Replies

Platelets and Venisections.

Hi All, I have been told by a reliable source that venisections only affect Haematocrit - no effect on platelets. Anybody have any views on this. I also often...

Hi All, I have been told by a reliable source that venisections only affect Haem...

AirconBob

•7 years ago

3 Replies

Reasonable Adjustments Request

Hi There my MPN Family, i am hoping you can give me some of your outstanding advice. I have E.T. my platelets now stand at 914 and my consultant has prepared...

Hi There my MPN Family, i am hoping you can give me some of your outstanding adv...

jeaniej1x

•7 years ago

24 Replies

Nose bleed

Hi Does anyone know if a nose bleed is a symptom of PV or from the venesection I had on Friday? I've not had a nose bleed since I was a child. I had a...

Hi Does anyone know if a nose bleed is a symptom of PV or from the venesection ...

Jacqx17

•7 years ago

17 Replies

Thank you and diagnosis question

Thank you for so many welcoming replies, I don't know any of you yet, but already I feel better, knowing your all there. I do have a question, my...

Thank you for so many welcoming replies, I don't know any of you yet, but alread...

Jacqx17

•7 years ago

4 Replies

What is the hct level women are aiming for?

My consultant said I'm aiming for 45 but I thought it was 42. I did question it but he said it's definitely 45. Am I wrong or where does it say it?

My consultant said I'm aiming for 45 but I thought it was 42. I did question it ...

Emeraldpv

•7 years ago

16 Replies

Newbie, Hello!

Hello I was diagnosed on Tuesday of this week, I am Jak2+ but I have to have a BMB as the dr isn't sure if it's just PV or borderline MF. I was feeling a...

Hello I was diagnosed on Tuesday of this week, I am Jak2+ but I have to have a B...

Jacqx17

•7 years ago

18 Replies

Beetroot face!

Hi Guys, I had 2 jabs of anaesthetic and 2 of cortisone into my shoulder yesterday and I just wonder if my lovely "beetroot" face, which I get now as a...

Hi Guys, I had 2 jabs of anaesthetic and 2 of cortisone into my shoulder yesterd...

Aime

•7 years ago

6 Replies

yet again another tummy upset !

Well yet again im feeling grot, since wed , finding it all a vicous circle ,i need to eat somthing because of meds and Asprin but then im in loo i felt all...

Well yet again im feeling grot, since wed , finding it all a vicous circle ,i ne...

catwoman2015

•7 years ago

17 Replies

London Forum?

Hi everyone I'm new to this so apologies if it's obvious..... I've heard that the forums are really excellent but don't know how to find out information, dates...

Hi everyone I'm new to this so apologies if it's obvious..... I've heard that th...

Hilarya

•7 years ago

4 Replies

Stabilising platelets

Hello, hope you are all well. I've been on HU for two years and my platelets have never really kept stable for more than 6 weeks and when they were stable my...

Hello, hope you are all well. I've been on HU for two years and my platelets hav...

Hidden

•7 years ago

8 Replies

Got a diagnosis

Thank for your support recently. I went back to see my consultant yesterday. I'm jak2 positive so I've got pv. He wasn't bothered about my liver levels,...

Thank for your support recently. I went back to see my consultant yesterday. I'm...

Emeraldpv

•7 years ago

8 Replies

Stomach Flu Monday and HU

I am recovering from stomach flu , vomiting and diarrhea, luckily only 24 hours. Now I'm left with so much gas and bloating I can't eat. I missed two doses of...

I am recovering from stomach flu , vomiting and diarrhea, luckily only 24 hours....

DH65

•7 years ago

4 Replies

Sore shin bones

Hi, Does anyone else suffer from sore bones? In particular my shin bones on both legs are very sore to touch. I'm PRV JAK2 -ve. Thanks!

Hi, Does anyone else suffer from sore bones? In particular my shin bones on both...

cwayman11

•7 years ago

5 Replies

Sore shin bones

Hi, Does anyone else suffer from sore bones? In particular my shin bones on both legs are very sore to touch. I'm PRV JAK2 -ve. Thanks!

Hi, Does anyone else suffer from sore bones? In particular my shin bones on both...

cwayman11

•7 years ago

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Starting Hydroxyurea

As my platlets currently 908 have been slowly rising have been told I should start on Hydroxyurea. I'm 45 in good condition and don't really have any symptoms...

As my platlets currently 908 have been slowly rising have been told I should sta...

Jasbak22

•7 years ago

25 Replies

Are supplements safe to take ?

Hi was just wondering if anyone takes vitimins etc i take Zinc and magnesium but im thinking of taking Co q10 good for heart health ,energy and for people on...

Hi was just wondering if anyone takes vitimins etc i take Zinc and magnesium bu...

catwoman2015

•7 years ago

6 Replies

Hydroxyurea and Backache

Hi everyone, Was diagnosed with ET last year at the age of 45 and started on daily aspirin and Hydroxyurea 5 times a week due to having 2 blood clots. Since...

Hi everyone, Was diagnosed with ET last year at the age of 45 and started on dai...

Janlol

•7 years ago

3 Replies

Lowering of Jakavi dosage and eczema

My Jakavi was reduced from 10mg bid to 5mg bid 3 weeks ago. For the last 10 days my arms and legs have been covered with itchy red dry skin, my SCT doctor...

My Jakavi was reduced from 10mg bid to 5mg bid 3 weeks ago. For the last 10 days...

crapaud

•7 years ago

4 Replies

Iron intake

Hi guys. Hope you are all doing well at the moment. I have a quick question to ask anyone with PV please - have you reduced the amount of red meat and iron...

Hi guys. Hope you are all doing well at the moment. I have a quick question to ...

Skyehope

•7 years ago

10 Replies

Platelets up

Morning all. I hope you're all doing well. I had my first follow up with my consultant last week after my diagnosis. I'm Jak2+ ET and currently on aspirin...

Morning all. I hope you're all doing well. I had my first follow up with my co...

westie71

•7 years ago

3 Replies

New to this community!

Hey! I am Jessie, I am a 28 year old female, and probably like most of you, I found out about my condition completely by accident. I learned that I am JAK2+...

Hey! I am Jessie, I am a 28 year old female, and probably like most of you, I fo...

Jessiefaith0717

•7 years ago

17 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2017

PNH

I'M RELATIVELY NEW HERE!

Essential Thrombocythemia

Enlarged spleen

Nerve damage

Positive dengue in dwngue duo but has high platelets

Need some help preparing for my next visit to see the hematologist please

Hi Chris

Newly diagnosed with PV

Platelets and Venisections.

Reasonable Adjustments Request

Nose bleed

Thank you and diagnosis question

What is the hct level women are aiming for?

Newbie, Hello!

Beetroot face!

yet again another tummy upset !

London Forum?

Stabilising platelets

Got a diagnosis

Stomach Flu Monday and HU

Sore shin bones

Sore shin bones

Starting Hydroxyurea

Are supplements safe to take ?

Hydroxyurea and Backache

Lowering of Jakavi dosage and eczema

Iron intake

Platelets up

New to this community!

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