Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for April 2020

Covid-19 and blood clotting

What does anyone make of recent reports of growing evidence that Covid-19 can cause blood clotting abnormalities in patients, which could increase their risk...

What does anyone make of recent reports of growing evidence that Covid-19 can ca...

Hat3

•5 years ago

72 Replies

Completed the 2.6 challenge for MPN Voice 🥳 🎉 🎉

Completed! 26.9 miles in 4 days!! 43 kilometres!! Woohoo! Thank you all so much for your kind donations and wonderful support! xx

Completed! 26.9 miles in 4 days!! 43 kilometres!! Woohoo! Thank you all so much...

Certeza

•5 years ago

9 Replies

Last mile of 2.6 challenge for MPN Voice

Excited! 1 mile to go!! Zumba time

Certeza

•5 years ago

3 Replies

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Informative web seminar today

It was good to get various viewpoints from all the participants today and I would recommend everyone to watch it if they get the chance.

It was good to get various viewpoints from all the participants today and I woul...

MarkD6701

•5 years ago

18 Replies

Survey re COVID-19 for MPN patients and caregivers – IMPaCCT studyInvestigating the impact of COVID-19 on Caregivers and patients

Researchers at Queen’s University Belfast and the University of Aberdeen, invite you to take part in an online research study investigating the impact of the...

Researchers at Queen’s University Belfast and the University of Aberdeen, invite...

Mazcd

Partner•5 years ago

1 Reply

Web semier covid mpn

Does anyone know is this covid 19 and mpn seminar today going to be shown on.lukemia care?

Does anyone know is this covid 19 and mpn seminar today going to be shown on.luk...

Irishgal12

•5 years ago

4 Replies

CoQ10 and platelets! Important info!

Once again there’s a weather change from hot to cold, it’s windy and I have trouble sleeping great time to research! 🙂 I found here that in human testing...

Once again there’s a weather change from hot to cold, it’s windy and I have trou...

Anag

•5 years ago

18 Replies

Myelofibrosis advice

Im new here.just one previous post.My bone marrow test results show after waiting 7 weks that i have primary myelofibrosis.I am upset that it is worse than I...

Im new here.just one previous post.My bone marrow test results show after waitin...

caroline_284

•5 years ago

25 Replies

Government guidelines

Just had call from GP practice saying I should shield . As I havnt had a letter or anything I have been going out for all these weeks keeping to guidelines....

Just had call from GP practice saying I should shield . As I havnt had a letter...

Mostew

•5 years ago

26 Replies

2.6 challenge to walk 26 miles

Thank you for all your donations so far. Happy to say I’ve done 21 miles since Sunday so only 5 more miles to go! I’ll complete this tomorrow as I’m letting my...

Thank you for all your donations so far. Happy to say I’ve done 21 miles since S...

Certeza

•5 years ago

5 Replies

Slightly alarming.

https://www.livescience.com/coronavirus-blood-clots.html

Pinkinwiltshire

•5 years ago

2 Replies

Has anyone suffered Gastro intestinal bleeding with ET. How high were their platelets?

I may have Gastro intestinal bleeding with Essential Thrombocythemia. I would like to see posts from friends on MPN Voice with their experience ofbthis

I may have Gastro intestinal bleeding with Essential Thrombocythemia. I would li...

azaelea

•5 years ago

10 Replies

Pegasys .. very slow results

Hi all I’ve been on Pegasys since December with very limited results so far , my consultant has been patient with me and increased the dose so now on maximum...

Hi all I’ve been on Pegasys since December with very limited results so far , m...

Suebon

•5 years ago

13 Replies

Finally, some good news! Pegasys and Phlebotomies are working!

PV JAK2+ diagnosed in Jan 2020 after suffering a TIA. Doc put me on twice daily baby aspirin, and Pegasys at only 25% dose (25ml/45mcg). After 8 weeks, my...

PV JAK2+ diagnosed in Jan 2020 after suffering a TIA. Doc put me on twice daily ...

JT_Marlin

•5 years ago

9 Replies

ARE WE ABOUT TO SEE A 2ND WAVE of CV–19 in the SOUTHERN HEMISPHERE?

Evening all... :-) Hoping that you are all doing well... Guys, I really do not want to sound like an alarmist, but... ...It is an odd observation, when one...

Evening all... :-) Hoping that you are all doing well... Guys, I really do not ...

socrates_8

•5 years ago

16 Replies

2.6 Challenge to walk 26 miles!

This is me and my sis on FaceTime doing a walking/marching/jogging workout! I’m the little pic doing a sidekick out of time with big sis 😂😂 she’ll love me...

This is me and my sis on FaceTime doing a walking/marching/jogging workout! I’m ...

Certeza

•5 years ago

1 Reply

9.5 miles and counting!

The 2.6 challenge is going well! Here’s me marching on the spot to warm up! https://www.justgiving.com/fundraising/vicky-s-2-6-challenge1855

The 2.6 challenge is going well! Here’s me marching on the spot to warm up! htt...

Certeza

•5 years ago

Be the first to reply

Histamine Pruritus or itch

Anyone had a huge histamine flare-up with COVID? Itch has been constant since 2am. I’m waiting for my GP to call me back. Shouldn’t be COVID as I’ve been...

Anyone had a huge histamine flare-up with COVID? Itch has been constant since 2a...

EleanorPV

•5 years ago

9 Replies

QUESTIONS ABOUT TRACING APPs???

Post by MPN-MATE Admin » Mon Apr 27, 2020 10:28 am Morning all... :D Not sure how many of you have heard about the latest tool in the fight against CV-19?...

Post by MPN-MATE Admin » Mon Apr 27, 2020 10:28 am Morning all... :D Not sure...

socrates_8

•5 years ago

12 Replies

Corona Virus Confusion

Hello, I am 51 and have polycythaemia vera, treated with hydroxy and aspirin. After weeks of trying I have received a letter from my haematologist stating that...

Hello, I am 51 and have polycythaemia vera, treated with hydroxy and aspirin. Af...

Ijbefc

•5 years ago

26 Replies

Disturbed sleep

I’m new here, diagnosed with PV JAK2 last May. I wondered if anyone else has night time headaches and sore toes (erythromelalgia) on a regular basis? I’ve had...

I’m new here, diagnosed with PV JAK2 last May. I wondered if anyone else has nig...

Tomsgranny

•5 years ago

10 Replies

High platelets

Hi, I've just joined, after having a blood test in February my platelets 508, fbc normal, inflammation slightly high. I had a fushion in June 2017 as anaemic,...

Hi, I've just joined, after having a blood test in February my platelets 508, fb...

Lizzie20

•5 years ago

9 Replies

So scared of having a stroke!

Hello. I am 39yr old female with ET CALR positive and have had a BMB that showed grade 2 myelofibrosis. My platelets at last check (Dec19) were 1190. I am...

Hello. I am 39yr old female with ET CALR positive and have had a BMB that showe...

May2019

•5 years ago

3 Replies

2.6 challenge - I’m walking 26 miles for MPN Voice!

Hi everyone, As a way to say thank you for the support MPN Voice has given me I’m going to do the distance of a marathon starting from today to raise money for...

Hi everyone, As a way to say thank you for the support MPN Voice has given me I’...

Certeza

•5 years ago

4 Replies

Elevated platelets - so worried

Hi, about a month and a half ago I had a routine blood test and my platelets were slightly elevated at 457 but the doctor didn’t seem concerned since I also...

Hi, about a month and a half ago I had a routine blood test and my platelets wer...

Bluedog16

•5 years ago

16 Replies

Elevated platelets

Hi, about a month and a half ago I had a routine blood test and my platelets were slightly elevated at 457 but the doctor didn’t seem concerned since I also...

Hi, about a month and a half ago I had a routine blood test and my platelets wer...

Bluedog16

•5 years ago

Be the first to reply

PQQ

Hi, has anyone tried PQQ? Just wondered what peoples thoughts were on this as it bolsters energy therefore ATP in your cells etc. :)

Hi, has anyone tried PQQ? Just wondered what peoples thoughts were on this as it...

EmeraldA

•5 years ago

5 Replies

Had enough staying in.

Like most of you I've been told to stay in for 12 weeks. I've already done six. I felt fatigue in the middle of March and decided to self isolate for two...

Like most of you I've been told to stay in for 12 weeks. I've already done six. ...

Sweetlucy

•5 years ago

29 Replies

MPN - Virtual Hang out / get together?

Been wondering - would there be any interest in getting an MPN virtual hang out - together? Not exactly sure about how it would work, but I know there have...

Been wondering - would there be any interest in getting an MPN virtual hang out ...

JenngeetingR828

•5 years ago

15 Replies

Ben Nevis

The best walk always starts with an ice lolly. First 26 floors done....

EleanorPV

•5 years ago

3 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2020

Covid-19 and blood clotting

Completed the 2.6 challenge for MPN Voice 🥳 🎉 🎉

Last mile of 2.6 challenge for MPN Voice

Informative web seminar today

Survey re COVID-19 for MPN patients and caregivers – IMPaCCT studyInvestigating the impact of COVID-19 on Caregivers and patients

Web semier covid mpn

CoQ10 and platelets! Important info!

Myelofibrosis advice

Government guidelines

2.6 challenge to walk 26 miles

Slightly alarming.

Has anyone suffered Gastro intestinal bleeding with ET. How high were their platelets?

Pegasys .. very slow results

Finally, some good news! Pegasys and Phlebotomies are working!

ARE WE ABOUT TO SEE A 2ND WAVE of CV–19 in the SOUTHERN HEMISPHERE?

2.6 Challenge to walk 26 miles!

9.5 miles and counting!

Histamine Pruritus or itch

QUESTIONS ABOUT TRACING APPs???

Corona Virus Confusion

Disturbed sleep

High platelets

So scared of having a stroke!

2.6 challenge - I’m walking 26 miles for MPN Voice!

Elevated platelets - so worried

Elevated platelets

PQQ

Had enough staying in.

MPN - Virtual Hang out / get together?

Ben Nevis

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