Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,126 posts

All posts for April 2020

Inept

I recently had an appointment at my local hospital, unrelated to the blood, for which I received a call telling me not to come in and the doctor would consult...

I recently had an appointment at my local hospital, unrelated to the blood, for ...

conno61

•5 years ago

6 Replies

what options are open to me?

I was on hydroxicarbomide for three years steadily increasing my dose to combat my platelet rise. In addition just over a year ago anagrelide was introduced....

I was on hydroxicarbomide for three years steadily increasing my dose to combat ...

Wyebird

•5 years ago

43 Replies

Letter from Government/GP???

Hi, I have ET Jak2 and am on Hydroxycarbamide and Clopidogrel. I am still confused. Have not had a letter to say have to isolate for 12 weeks. Anyone else...

Hi, I have ET Jak2 and am on Hydroxycarbamide and Clopidogrel. I am still confu...

Jennytheb

•5 years ago

36 Replies

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Got on the supermarket priority list for vulnerable people

I have been reading your comments over last week's on how to get on the supermarket lists. I followed advice and registered on government website. I phoned...

I have been reading your comments over last week's on how to get on the supermar...

MPort

•5 years ago

7 Replies

Food parcels

When are we classed as vulnerable in Northern Ireland supposed to be receiving these emergency food parcels I've been hearing about?

When are we classed as vulnerable in Northern Ireland supposed to be receiving t...

23938112

•5 years ago

1 Reply

Hydroxycarbamide and condoms

Do you need condoms with Hydroxycarbamide if you are both mid sixty ?

Palace53

•5 years ago

8 Replies

Vulnerability letter Wales

Good morning everyone. I received my vulnerability letter this morning - at last! I live in South Wales and have PV and ET and take hydroxycarbamide and 75mg...

Good morning everyone. I received my vulnerability letter this morning - at las...

Turfbeg

•5 years ago

2 Replies

In answer to Aime ,sculpture of Roe deer

Kept this one as patination not quite right for expo,but one morning recently when I was really down,the sun light on the sculpture cheered me,so took a pic....

Kept this one as patination not quite right for expo,but one morning recently wh...

Inca

•5 years ago

10 Replies

tingling in left sole

I have a tingling and burning on my left sole for a month, I am taking hydroxyurea 3 times aweek, and aspirin, for ET. Ιnteresting to see other people's...

I have a tingling and burning on my left sole for a month, I am taking hydroxyu...

krotsida

•5 years ago

24 Replies

Blood test

How are people getting a blood test? In London it's telephone consultations only My GP surgery is also telephone consultations only. Last time a district nurse...

How are people getting a blood test? In London it's telephone consultations only...

Sweetlucy

•5 years ago

17 Replies

Keeping busy

Hi Guys, if anyone wants a relaxing pastime but are not very artistic like me, I find the adult colouring books really good. I'm not artistic like Jill and...

Hi Guys, if anyone wants a relaxing pastime but are not very artistic like me, ...

Aime

•5 years ago

19 Replies

Neighbours

Hi all I live in a corner bungalow with a narrow drive in and out for me and next door who says she has copd her two nieces live at 12&14 her sister at number...

Hi all I live in a corner bungalow with a narrow drive in and out for me and nex...

PhilReade

•5 years ago

20 Replies

Blood test

Hi hope everyone keeping safe we'll had results of first blood test for et jak2+ said plates have gone down from 890 to 650 so to keep on with same meds so...

Hi hope everyone keeping safe we'll had results of first blood test for et jak2+...

Chel1

•5 years ago

5 Replies

Platelets up!

Hi, as I have mentioned before Im newly diagnosed 4 weeks ago now, but I just had my bloods done to find out my cholesterol level and nutrient levels in blood....

Hi, as I have mentioned before Im newly diagnosed 4 weeks ago now, but I just ha...

EmeraldA

•5 years ago

15 Replies

Treatment

Has anyone in the UK currently under treatment been told their medication or treatment is going to be put on hold. I haven't heard anything personally but have...

Has anyone in the UK currently under treatment been told their medication or tre...

heathermc

•5 years ago

16 Replies

Trial for an ET drug update called Bomedemstat

https://www.hematologyadvisor.com/home/topics/thrombotic-disorders/bomedemstat-receives-fast-track-status-for-essential-thrombocythemia/

https://www.hematologyadvisor.com/home/topics/thrombotic-disorders/bomedemstat-r...

EmeraldA

•5 years ago

8 Replies

Silent migraines

Hi all, just a rather quick question, Before I was diagnosed just over a week ago, I was getting random silent migraines. Obviously now I know why. I’m on...

Hi all, just a rather quick question, Before I was diagnosed just over a week a...

MadamCholet1

•5 years ago

30 Replies

CALORIFIC RESTRICTION (CR) SHOWS REDUCTIONS IN INFLAMMATION & AGE-RELATED DISEASES

Post by MPN-MATE Admin » Tue Apr 14, 2020 9:20 am Morning all... :D I hope that you are all staying safe & well... This article follows on for those...

Post by MPN-MATE Admin » Tue Apr 14, 2020 9:20 am Morning all... :D I hope th...

socrates_8

•5 years ago

12 Replies

Query about potential cures or progession cures for MPNs

Hi everyone, as a newbie to MPNs and in my own case ET Jak2 positive. I have been researching what potential cures could be on the horizon. Does anyone here...

Hi everyone, as a newbie to MPNs and in my own case ET Jak2 positive. I have bee...

EmeraldA

•5 years ago

9 Replies

Nature

This is one visitor who was allowed into our garden.xx 🦔🦔

Aime

•5 years ago

6 Replies

Live ask the expert webinar shortly

Don’t miss TODAY’s important free, live webinar with MPN experts Drs. Michaelis and Scandura including discussion of trials on whether MPN drugs can limit...

Don’t miss TODAY’s important free, live webinar with MPN experts Drs. Michaelis ...

andrewschorr

•5 years ago

1 Reply

COVID 19 Facts you may not know - for EU citizens

Sorry that the link was blocked in the EU. It is open source, so here is the text, along with the citation of the source. Just to put in a plug for...

Sorry that the link was blocked in the EU. It is open source, so here is the te...

hunter5582

•5 years ago

12 Replies

VitD and MPN

Off topic just wondering if anyone has been told they shouldn't take VitD? Ive been taking it for a couple of years since my GP told me I'm deficient but I...

Off topic just wondering if anyone has been told they shouldn't take VitD? Ive b...

Camelian

•5 years ago

6 Replies

Another creation from gran!!

Hi guys, the chicken I made for my grandkids was on the previous weekend. This is a picture of my disastrous cake, which stuck, then fell to bits! It's only...

Hi guys, the chicken I made for my grandkids was on the previous weekend. This ...

Aime

•5 years ago

18 Replies

COVID 19 Facts You may not know

Was sent this link to a few facts about COVID 19 that you may not know. Found a few things of interest I was unaware of, including that sensory loss of taste...

Was sent this link to a few facts about COVID 19 that you may not know. Found a...

hunter5582

•5 years ago

11 Replies

A reason for MPN patients to have a more serious reaction to Covid19

I have seen a lot of people questioning as to whether having a MPN makes us more at risk with Covid19. I just read a post on Twitter from a doctor who spoke...

I have seen a lot of people questioning as to whether having a MPN makes us more...

clubdino

•5 years ago

11 Replies

national differences among us in healthcare

One of the things that strikes me on this list is the differences in the ways that our countries are handling the Covid 19 crisis. Being from the U.S., I am...

One of the things that strikes me on this list is the differences in the ways th...

souplover

•5 years ago

5 Replies

PV & fatigue

I've posted a few times before asking about how to handle really bad fatigue. I'm finding over time that I am doing a little better. It's not that I...

I've posted a few times before asking about how to handle really bad fatigue. I...

souplover

•5 years ago

6 Replies

My little cherubs!

These are my two grandsons and the Easter chick made by granny and delivered at night once they were in bed. This was their faces when they saw him in the...

These are my two grandsons and the Easter chick made by granny and delivered at ...

Aime

•5 years ago

22 Replies

Smile, it’s Easter 🐣

Happy Easter from me and my beautiful Easter Bunny (our granddaughter 😍)

lizzziep

•5 years ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2020

Inept

what options are open to me?

Letter from Government/GP???

Got on the supermarket priority list for vulnerable people

Food parcels

Hydroxycarbamide and condoms

Vulnerability letter Wales

In answer to Aime ,sculpture of Roe deer

tingling in left sole

Blood test

Keeping busy

Neighbours

Blood test

Platelets up!

Treatment

Trial for an ET drug update called Bomedemstat

Silent migraines

CALORIFIC RESTRICTION (CR) SHOWS REDUCTIONS IN INFLAMMATION & AGE-RELATED DISEASES

Query about potential cures or progession cures for MPNs

Nature

Live ask the expert webinar shortly

COVID 19 Facts you may not know - for EU citizens

VitD and MPN

Another creation from gran!!

COVID 19 Facts You may not know

A reason for MPN patients to have a more serious reaction to Covid19

national differences among us in healthcare

PV & fatigue

My little cherubs!

Smile, it’s Easter 🐣

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