Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for July 2022

intense burning in arms and legs

hi everyone this heat is a nightmare lm at home with fans and regular cool flannels but the burning sensation in my arms is worrying me. l take a daily...

hi everyone this heat is a nightmare lm at home with fans and regular cool fla...

Hidden

•2 years ago

4 Replies

ET transforming?

I was diagnosed with ET around 12 years ago. I was on Hydroxy at first but been on Anagrelide for a few years. I’ve been anaemic for a long time, usually iron...

I was diagnosed with ET around 12 years ago. I was on Hydroxy at first but been ...

lizzziep

•2 years ago

33 Replies

itching, no meds yet

Hi everyone, I recently wrote as joined as a new member and newly diagnosed with ET CALR mutation. I have just over another 2 weeks to see nurses at...

Hi everyone, I recently wrote as joined as a new member and newly diagnosed w...

Grendall

•2 years ago

3 Replies

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

Video of the MPN Voice patients’ virtual forum, 11 July 2022

This online forum – Symptom Management - featured talks from: Claire Woodley, Advanced Nurse Practitioner, Guy’s & St Thomas’ Hospital (GSTT) and Lauren Urwin,...

This online forum – Symptom Management - featured talks from: Claire Woodley, Ad...

Mazcd

Partner•2 years ago

1 Reply

MPN Voice Vlogcasts – In Conversation With… Dr Clodagh Keohane, Consultant Haematologist, The Mercy Hospital, Cork.

MPN Voice Vlogcasts – In Conversation With… a series of monthly informal conversations with members of the MPN community with Nona co-chair of MPN Voice and a...

MPN Voice Vlogcasts – In Conversation With… a series of monthly informal convers...

Mazcd

Partner•2 years ago

3 Replies

Inteferon benefits

While my platelets refused to budge much on Interferon since stopping it the joints in my hands and feet have become painful my hips and lower back ache. My...

While my platelets refused to budge much on Interferon since stopping it the j...

ciye

•2 years ago

6 Replies

Side effects of Interferon

i have just had my 5 th weekly Interferon Injection . having weened off Ruxolitinib . I thought by now the side effects of nausea dizziness fatigue...

i have just had my 5 th weekly Interferon Injection . having weened off Ruxoli...

Heather270240

•2 years ago

15 Replies

Recommended safe vitamins

I have Polycythaemia Vera and take Hydroxycarbamide 2x500mg daily. Any recommendations for vitamins that are safe to take

I have Polycythaemia Vera and take Hydroxycarbamide 2x500mg daily. Any recommend...

Edinburgh1953

•2 years ago

2 Replies

heatwave precautions?

In the light of the predicted extreme hot weather in UK and Europe this week re there any particular risks to health or precautions which are advised for MPN...

In the light of the predicted extreme hot weather in UK and Europe this week r...

Inclement

•2 years ago

2 Replies

Comparing two INFs

This is mostly for science nerds, a comparison of the old PEG-Intron (no longer available) to Pegasys, shedding some light on what the Besremi guys are doing...

This is mostly for science nerds, a comparison of the old PEG-Intron (no longer ...

EPguy

•2 years ago

2 Replies

FACTOR VIII RISTOCETIN COFACT and FACTOR VIII ACTIVITY ASSAY results

Hello, I hope you are all doing well! Quick question, does daily aspirin lower FACTOR VIII RISTOCETIN COFACT and FACTOR VIII ACTIVITY ASSAY or is this a...

Hello, I hope you are all doing well! Quick question, does daily aspirin lowe...

Piperpeeps

•2 years ago

2 Replies

Medical holiday insurance

hello everyone. I just thought I’d let you know about my experience of obtaining travel insurance if anyone is looking for some. I am ET-Jak2 pos on peg. I...

hello everyone. I just thought I’d let you know about my experience of obtaini...

Jynx93

•2 years ago

11 Replies

20 year mystery possibly being solved

Hello all, A while back I wrote a long post and I thought I’d give an update. Basically the long story short, I was diagnosed with Polycythemia Vera when I...

Hello all, A while back I wrote a long post and I thought I’d give an update. B...

Chaucer89

•2 years ago

12 Replies

Regrets? I've had a few...

After reading a few thoughts on a few ppl taking HU, not wearing gloves, sharing towels, I want you to reconsider! HU is carcinogenic--please follow all...

After reading a few thoughts on a few ppl taking HU, not wearing gloves, sharing...

upham28

•2 years ago

10 Replies

nose bleeds and bruising

hello my husband has been having some nose bleeds past couple of days and also some bruising in the past few weeks? He isn’t on any medication and he’s Calr...

hello my husband has been having some nose bleeds past couple of days and also ...

Green1988

•2 years ago

9 Replies

Hernia repair

I have ET and need a repair for an inguinal hernia. Does anyone have any advice whether to have open or keyhole surgery? Any problems with bleeding or...

I have ET and need a repair for an inguinal hernia. Does anyone have any advic...

Hombre

•2 years ago

6 Replies

Recently diagnosed

Hi all, I’ve recently just been diagnosed with Essential thrombocythemia and have the CALR mutation. Had a telephone appointment from heamotology doctor and...

Hi all, I’ve recently just been diagnosed with Essential thrombocythemia and h...

Grendall

•2 years ago

9 Replies

Is a normal lifespan possible for PV patients?

From our friends at MPN Forum Magazine. https://mpnforum.com/ The short answer is YES - with proper management people with PV can live a normal lifespan....

From our friends at MPN Forum Magazine. https://mpnforum.com/ The short answer...

hunter5582

•2 years ago

15 Replies

email request

can anyone help with email for Professor Harrison I cannot find one . Many thanks. Julia Exeter UK

can anyone help with email for Professor Harrison I cannot find one . Many than...

Exeter21

•2 years ago

2 Replies

Strange sensations

for some time (over a year) I’ve had sensations in my lowest part of my legs (mostly the front). It feels like I have sunburnt them, although I definitely...

for some time (over a year) I’ve had sensations in my lowest part of my legs (mo...

Peachjoy

•2 years ago

18 Replies

Side effects of HU

My mum wass diagnosed with ET Jak 2 positive.. In her last blood test her white blood count was slightly lower than normal at 3967.. She is taking Hydroxurea...

My mum wass diagnosed with ET Jak 2 positive.. In her last blood test her white...

PHGR

•2 years ago

9 Replies

Anyone out there living with Polycythaemia Rubra Vera + Multiple Myeloma?

Does anybody out there have more My friend has PRV and MM which appear to be unrelated. Polycythaemia Rubra Vera since c2005 (well-controlled with Hydrea)...

Does anybody out there have more My friend has PRV and MM which appear to be u...

SolasChoir

•2 years ago

2 Replies

sweats and itching in MF

what is the cause of sweating and itching in MF. I suffer badly with sweats and currently take oxibutilyn. Has anyone received any other treatment for these...

what is the cause of sweating and itching in MF. I suffer badly with sweats and ...

artydutch

•2 years ago

9 Replies

dipss versus dipss plus scoring.

Can anyone explain the difference. I have had further genetic tests and due results today. What extra bit is tested in dipss plus? I have MF and scored so far...

Can anyone explain the difference. I have had further genetic tests and due resu...

artydutch

•2 years ago

1 Reply

Bone marrow biopsy

Hi everyone, I have PV newly diagnosed and am concerned re BMB, can anyone tell me what to expect , is it painful after and for how long, cns said you can...

Hi everyone, I have PV newly diagnosed and am concerned re BMB, can anyone tell...

Cityreach

•2 years ago

42 Replies

Bmb confirms ET mpl

Results from bmb all good nothing different from original blood work. Platelets currently 650 need to restart HU, sadly organist didn't work for me,I have...

Results from bmb all good nothing different from original blood work. Platelets...

ciye

•2 years ago

4 Replies

Webinar – Can I get the Best MPN Care?

PEN (Patient Empowerment Network) is hosting a MPN webinar on Tuesday, 9 August 2022, entitled “Can I Get the Best Myeloproliferative Neoplasm (MPN) Care?”...

PEN (Patient Empowerment Network) is hosting a MPN webinar on Tuesday, 9 August ...

Mazcd

Partner•2 years ago

Be the first to reply

Monthly blog dedicated to young people living with MPNs - Alice’s tenth blog: Fatigue, exercise and wellbeing

This month in her tenth blog Alice focusses on fatigue, a common symptom of MPNs, which can be a significant challenge for patients. She talks about what...

This month in her tenth blog Alice focusses on fatigue, a common symptom of MPNs...

Mazcd

Partner•2 years ago

Be the first to reply

How long before you are diagnosed?

I know I had symptoms in the late 1990's and never really took them seriously Yes I had brain fog, yes I was tired etc etc Saw the GP, suggested it was an ear...

I know I had symptoms in the late 1990's and never really took them seriously Ye...

shiftzz

•2 years ago

23 Replies

Besremi for Covid and a different type of IFN-α 2b in Covid treatment trial

The Besremi guys did a small trial that reduced time to negative covid PCR test to 7 from 11.5 days https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8672342/...

The Besremi guys did a small trial that reduced time to negative covid PCR test ...

EPguy

•2 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2022

intense burning in arms and legs

ET transforming?

itching, no meds yet

Video of the MPN Voice patients’ virtual forum, 11 July 2022

MPN Voice Vlogcasts – In Conversation With… Dr Clodagh Keohane, Consultant Haematologist, The Mercy Hospital, Cork.

Inteferon benefits

Side effects of Interferon

Recommended safe vitamins

heatwave precautions?

Comparing two INFs

FACTOR VIII RISTOCETIN COFACT and FACTOR VIII ACTIVITY ASSAY results

Medical holiday insurance

20 year mystery possibly being solved

Regrets? I've had a few...

nose bleeds and bruising

Hernia repair

Recently diagnosed

Is a normal lifespan possible for PV patients?

email request

Strange sensations

Side effects of HU

Anyone out there living with Polycythaemia Rubra Vera + Multiple Myeloma?

sweats and itching in MF

dipss versus dipss plus scoring.

Bone marrow biopsy

Bmb confirms ET mpl

Webinar – Can I get the Best MPN Care?

Monthly blog dedicated to young people living with MPNs - Alice’s tenth blog: Fatigue, exercise and wellbeing

How long before you are diagnosed?

Besremi for Covid and a different type of IFN-α 2b in Covid treatment trial

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2022

﻿intense burning in arms and legs

ET transforming?

itching, no meds yet

Video of the MPN Voice patients’ virtual forum, 11 July 2022

MPN Voice Vlogcasts – In Conversation With… Dr Clodagh Keohane, Consultant Haematologist, The Mercy Hospital, Cork.

﻿Inteferon benefits

﻿Side effects of Interferon

Recommended safe vitamins

﻿heatwave precautions?

Comparing two INFs

FACTOR VIII RISTOCETIN COFACT and FACTOR VIII ACTIVITY ASSAY results

Medical holiday insurance

20 year mystery possibly being solved

Regrets? I've had a few...

nose bleeds and bruising

﻿Hernia repair

Recently diagnosed

Is a normal lifespan possible for PV patients?

email request

Strange sensations

﻿Side effects of HU

﻿Anyone out there living with Polycythaemia Rubra Vera + Multiple Myeloma?

sweats and itching in MF

dipss versus dipss plus scoring.

﻿Bone marrow biopsy

﻿Bmb confirms ET mpl

Webinar – Can I get the Best MPN Care?

Monthly blog dedicated to young people living with MPNs - Alice’s tenth blog: Fatigue, exercise and wellbeing

How long before you are diagnosed?

Besremi for Covid and a different type of IFN-α 2b in Covid treatment trial

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

intense burning in arms and legs

Inteferon benefits

Side effects of Interferon

heatwave precautions?

Hernia repair

Side effects of HU

Anyone out there living with Polycythaemia Rubra Vera + Multiple Myeloma?

Bone marrow biopsy

Bmb confirms ET mpl