Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for January 2019

Can we take melatonin if we have high platelets?

I haven’t had a chance to ask my doctor yet so interested to hear from others on this

I haven’t had a chance to ask my doctor yet so interested to hear from others on...

Janeydot

•6 years ago

5 Replies

ET & Venesections

Hi Does anyone with ET have regular venesections to bring their Haematacrit into range. Thanks

Hi Does anyone with ET have regular venesections to bring their Haematacrit int...

TrickyDicky

•6 years ago

17 Replies

Bugs!

Hi Guys, hope you are all well and avoiding bugs. My lovely grandkids, who don’t usually give me bugs, have got me this time! Had 3 weeks of cough, temp, etc...

Hi Guys, hope you are all well and avoiding bugs. My lovely grandkids, who don’...

Aime

•6 years ago

12 Replies

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HELP! with fatigue, brain fog and forgetfulness

HI there! I am 31 years old and I was recently diagnosed with ET, negative 3 mutation and platelets were 1.8 million over the summer when I was diagnosed, now...

HI there! I am 31 years old and I was recently diagnosed with ET, negative 3 mut...

Jjustjen

•6 years ago

7 Replies

Antacid and aspirin interactions

Does anyone take antacids along with aspirin? Im prescribed lanzoprazole but I've had mixed information from doctors when I've asked if taking lanzoprazole...

Does anyone take antacids along with aspirin? Im prescribed lanzoprazole but I'v...

Camelian

•6 years ago

11 Replies

Enlarged liver

Hello everyone! I'm 28, have been diagnosed with ET 3 years ago and have been under treatment with Thromboreductin (Anagrelide) for a few months. I got an...

Hello everyone! I'm 28, have been diagnosed with ET 3 years ago and have been un...

Virghil

•6 years ago

13 Replies

Pegasys- liver enzymes - dandelion root tea

Hello I’m new here. I have ET for almost 20 years & have been taking Hydrea, now it’s progressed to MFI have started on Pegasys 90 per week as well as hydrea....

Hello I’m new here. I have ET for almost 20 years & have been taking Hydrea, now...

Mocha38

•6 years ago

16 Replies

Bone marrow biopsy, scared

Hi, I'm having a BMB this Thursday, really anxious and worried about it all, especially pain. I will be having local anithetic to numb the area, it's when it...

Hi, I'm having a BMB this Thursday, really anxious and worried about it all, esp...

Hidden

•6 years ago

13 Replies

ET AND FLYING

Hi I'm going on holiday in August and I'm worried about developing a clot after reading posts from people who did. It's a 4 hour flight. My question is have...

Hi I'm going on holiday in August and I'm worried about developing a clot after ...

Camelian

•6 years ago

28 Replies

Hydrea

I am 76, Polycythaemia Vera for 9 years, taking Hydrea 3 capsules daily now. This controls white blood cells well, but not red blood corpuscles, so I will have...

I am 76, Polycythaemia Vera for 9 years, taking Hydrea 3 capsules daily now. Thi...

lucieboo

•6 years ago

20 Replies

Pegasy Jak2+ or CALR

I have searched a bit on Healthunlocked and it seems Pegasy has most success amoung ET that are JAK2+ rather than ET patients with CALR. When I say success I...

I have searched a bit on Healthunlocked and it seems Pegasy has most success amo...

BloodZero

•6 years ago

1 Reply

How Does Pegasy help ET?

Before I start on Pegasy Im trying to understand the process, the mechanism that Interferons use to lower platelets. There isnt much on the net, but from what...

Before I start on Pegasy Im trying to understand the process, the mechanism that...

BloodZero

•6 years ago

7 Replies

Previous venous thrombus as risk factor?

I'm still waiting for a definitive diagnosis (likely ET, JAK2 negative) and had my first haematology consultation today. I'm still awaiting the results of MPL...

I'm still waiting for a definitive diagnosis (likely ET, JAK2 negative) and had ...

RedSunrise

•6 years ago

21 Replies

MPN Voice patients' forum - Cork, Ireland

We are very pleased to announce that we will be holding the first MPN Voice patients’ forum in Cork, Ireland, on Saturday 18th May 2019, 10.30 am – 4.30 pm,...

We are very pleased to announce that we will be holding the first MPN Voice pati...

Mazcd

Partner•6 years ago

1 Reply

Subclavian Steal Syndrome along with MPN

Hello all, Is there anyone who has Subclavian Steal Syndrome along with some MPN ( ET or PV etc ) .Would like to know how they coped with a double whammy such...

Hello all, Is there anyone who has Subclavian Steal Syndrome along with some MPN...

Iwillwin123

•6 years ago

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Colitis correlation (with MPN or Pegasys use)

I have read papers on Pegasys that there's a risk of Colitis with its use. The day of my 8th injection I had serious pain in my abdomen and passed a small...

I have read papers on Pegasys that there's a risk of Colitis with its use. The d...

jon1972

•6 years ago

2 Replies

hydroxyurea side effects?

Hi everyone! I I was recently diagnosed with polycythemia vera and I would like to know what side effects have been experienced by others taking hydroxyurea....

Hi everyone! I I was recently diagnosed with polycythemia vera and I would like ...

IsabelPV

•6 years ago

22 Replies

Exercise, cancer and Dementia

I thought some of you might be interested in some information that my daughter passed on to me (she is a doctor in Hampshire) - copied verbatim: Just had...

I thought some of you might be interested in some information that my daughter p...

Ovingite

•6 years ago

6 Replies

PV BUT elevated ESR

Is there anyone here who has PV , jak 2 positive BUT elevated ESR ? Could you please share what the elevated ESR was attributed to ?

Is there anyone here who has PV , jak 2 positive BUT elevated ESR ? Could you ...

Iwillwin123

•6 years ago

7 Replies

More Hydro

Hi fellow sufferers, latest recommendation from my haem to take 1000 mg per day without weekends. I guess he wants to lower my red cell counts and haematocrit...

Hi fellow sufferers, latest recommendation from my haem to take 1000 mg per day...

Kelly2

•6 years ago

20 Replies

Help

I'm wanting to put MPN Voice as my birthday fundraiser on facebook, hopefully will make people aware of mpn & donations would be great. Does anyone know how...

I'm wanting to put MPN Voice as my birthday fundraiser on facebook, hopefully wi...

Avamia94

•6 years ago

3 Replies

How did you feel when first diagnosed with ET?

Hi all I wondered how people felt when they were first diagnosed with ET and whether that has changed as you've had time to research and understand the...

Hi all I wondered how people felt when they were first diagnosed with ET and whe...

Lina_uk

•6 years ago

14 Replies

Very odd conversation with haematologist today!

So, just saw my 3rd haematologist today. Very odd conversation. Interested to hear what anyone thinks? I was diagnosed ET JAK2 +ve 2016. Capillary blood was...

So, just saw my 3rd haematologist today. Very odd conversation. Interested to he...

Hidden

•6 years ago

23 Replies

The forgotten minority

There seems to be a lack of Research into what exactly is wrong with the very small minority of PV patients who come back Triple Negative to any of the known...

There seems to be a lack of Research into what exactly is wrong with the very sm...

DoubtingT

•6 years ago

6 Replies

ET and treatmeant choices

Hi All, Was diagnosed with ET about 10 years ago and platelet count averages around 700 and have been on low dose aspirin ever since. Other than general...

Hi All, Was diagnosed with ET about 10 years ago and platelet count averages aro...

Crofty7

•6 years ago

26 Replies

High Blood Count & Platelet Counts

High CBC & Platelet Counts I just recently did an analysis of all the blood work that I've had done since 2002 (total of 14 blood tests) and am not sure if I...

High CBC & Platelet Counts I just recently did an analysis of all the blood work...

riccamarsh

•6 years ago

2 Replies

Pain across upper back.

Wondering if anyone with ET has suffered from really bad ache and pain across the upper back rib cage from one side to the other. Is this a symptom? I have...

Wondering if anyone with ET has suffered from really bad ache and pain across th...

azaelea

•6 years ago

3 Replies

Cindy12

I have just taken the courage to join Health Unlocked! I was diagnosed with ET at the age of 81 and am still here at 86 thanks to Hydroxycarbamide! I hope I...

I have just taken the courage to join Health Unlocked! I was diagnosed with ET ...

Cindy12

•6 years ago

3 Replies

Cindy12

I just have taken the courage to join Health Unlocked. I was diagnosed with ET at the age of 81 and am still here at 86 thanks to Hydroxycarbamide! As for...

I just have taken the courage to join Health Unlocked. I was diagnosed with ET...

Cindy12

•6 years ago

6 Replies

Oxygen levels- is 90 too low?

Hi. My husband has post PV Myelofibrosis and is poorly at the moment due to a sore throat, nasal congestion with fevers, fatigue. He was assessed yesterday by...

Hi. My husband has post PV Myelofibrosis and is poorly at the moment due to a so...

Fika500

•6 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2019

Can we take melatonin if we have high platelets?

ET & Venesections

Bugs!

HELP! with fatigue, brain fog and forgetfulness

Antacid and aspirin interactions

Enlarged liver

Pegasys- liver enzymes - dandelion root tea

Bone marrow biopsy, scared

ET AND FLYING

Hydrea

Pegasy Jak2+ or CALR

How Does Pegasy help ET?

Previous venous thrombus as risk factor?

MPN Voice patients' forum - Cork, Ireland

Subclavian Steal Syndrome along with MPN

Colitis correlation (with MPN or Pegasys use)

hydroxyurea side effects?

Exercise, cancer and Dementia

PV BUT elevated ESR

More Hydro

Help

How did you feel when first diagnosed with ET?

Very odd conversation with haematologist today!

The forgotten minority

ET and treatmeant choices

High Blood Count & Platelet Counts

Pain across upper back.

Cindy12

Cindy12

Oxygen levels- is 90 too low?

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