Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for September 2021

Appointment got sorted out eventually & flu,booster jab

Hi will after been messed about with my appointments, there have now book me in for 20th October,got have bloods done again not fault of mine why got cancel...

Hi will after been messed about with my appointments, there have now book me in ...

Jody00

•3 years ago

2 Replies

New Hospital new start

Hello all Hope everyone is well I wrote on here a few months ago about changing my Haemotoligist as felt I needed new eyes on my case. So today I went for my...

Hello all Hope everyone is well I wrote on here a few months ago about changing...

JeniMac

•3 years ago

14 Replies

Good news

I’m ET Jak2. Just had my 3rd hospital consultation and I was pleased to hear that after 9 weeks on Pegasys, 45mg weekly, my platelets have dropped from 590 to...

I’m ET Jak2. Just had my 3rd hospital consultation and I was pleased to hear tha...

Jynx93

•3 years ago

23 Replies

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Possible JAK2+, wondering what the next steps are?

Hi everyone. I'm a 32F, was recently referred to a hematologist due to my family history of blood clots, heart attacks, etc. As a part of testing my hem also...

Hi everyone. I'm a 32F, was recently referred to a hematologist due to my family...

B3189

•3 years ago

16 Replies

3rd dose COVID vaccination for MPN patients

PLEASE NOTE WE HAVE UPDATED THIS INFORMATION, SEE FURTHER DOWN THE PAGE AND ALSO THE SEPARATE POST...

PLEASE NOTE WE HAVE UPDATED THIS INFORMATION, SEE FURTHER DOWN THE PAGE AND ALSO...

Mazcd

Partner•3 years ago

44 Replies

Update on BMB

So, I got lucky the other day when my hematology nurse called and said they had an opening yesterday to review my results. I met with my doctor and she said...

So, I got lucky the other day when my hematology nurse called and said they had ...

Cja1956

•3 years ago

6 Replies

Covid19 booster.

Hello my MPN brothers and sisters. Just an update. I received yesterday morning Covid Phyzer booster and by the afternoon it got quite painful and by the...

Hello my MPN brothers and sisters. Just an update. I received yesterday morning ...

light

•3 years ago

12 Replies

PV and abnormal low protein in blood

I have had PV for 4 years and take Hydroxycarbamide two 500mg daily. Recently posted about sensations in feet and legs and received replies which I was...

I have had PV for 4 years and take Hydroxycarbamide two 500mg daily. Recently p...

Edinburgh1953

•3 years ago

2 Replies

Leukaemia care/NHS antibody trial

Has anyone else seen the NHS antibody trial for cancer patients, it came in an email from leukaemia care I tried to sign up but two questions are Are you on...

Has anyone else seen the NHS antibody trial for cancer patients, it came in an e...

Melaniem59

•3 years ago

15 Replies

Besremi - 6 month update

Hi, I thought you might be interested in an update of my experience to date with Besremi. I started on Besremi 6 months ago as I was proving to be HU...

Hi, I thought you might be interested in an update of my experience to date wit...

JohnSC

•3 years ago

25 Replies

Peg Interferon and flu jab

Hi All, I was offered the flu jab this year and decided I wanted to have it. However, now I’m wondering whether it’s ok to get it with Interferon. The leaflet...

Hi All, I was offered the flu jab this year and decided I wanted to have it. How...

Nay123

•3 years ago

17 Replies

Jabs

Looking for feedback I have ET and JAK2mutation I was diagnosed end of June 2021 I had no symptoms and still don't my platelets we're 520 and now 445 i...

Looking for feedback I have ET and JAK2mutation I was diagnosed end of June 20...

ChillyAsh34

•3 years ago

10 Replies

Finally decided to go private.

I’ve taken the plunge after 4 years of little progress with my GP referral to Haematology stuck in the system backlog (current wait time 60 weeks!) I’ve...

I’ve taken the plunge after 4 years of little progress with my GP referral to Ha...

Peetzil

•3 years ago

20 Replies

Myleofibrosis diagnosis

Thank you to Mark for the link and invite. My husband, Fred, and I just found out in July that he has MF, which we never even heard of. Lots of fear and...

Thank you to Mark for the link and invite. My husband, Fred, and I just found o...

Kashworth

•3 years ago

11 Replies

Clinical Trial Update

Hello again. So wanted to update the group to say that I have been accepted into the clinical trial for IMG-7289. I have a meeting with my hemo/onco today to...

Hello again. So wanted to update the group to say that I have been accepted into...

Miriammusic

•3 years ago

6 Replies

Problems getting Peg

Hi Just wandering if anyone is having problems getting Peg. I went to pick up my prescription normally get 4 Pre-filled syringes. The pharmacy said they only...

Hi Just wandering if anyone is having problems getting Peg. I went to pick up m...

Hidden

•3 years ago

3 Replies

MPN VOICE FUNDRAISING HEROES UPDATE OCTOBER 2021

The MPN Voice Fundraising Team would like to say a huge Thank You, to everyone who is taking part in fundraising events and of course your fantastic...

The MPN Voice Fundraising Team would like to say a huge Thank You, to everyone w...

Mazcd

Partner•3 years ago

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Second Opinion

Hey guys, I went to my 1st doctor which is younger hema these are my symptoms My 1st ever platelets is 595,000 and high WBC Dizziness Tinnitus Itching palms...

Hey guys, I went to my 1st doctor which is younger hema these are my symptoms My...

Anonymous022719-

•3 years ago

5 Replies

App being closed?

A question for Maz - is the HealthUnlocked app on phones being discontinued? (or am I getting message scams to try + get me to log in on a link)? Anne-Marie x

A question for Maz - is the HealthUnlocked app on phones being discontinued? (or...

amhann

•3 years ago

12 Replies

3rd covid booster

Had my 3rd covid booster on Saturday. I can’t say I recommend having your Peg jab the night before! Felt horrendous for a couple of days after. I live in the...

Had my 3rd covid booster on Saturday. I can’t say I recommend having your Peg ja...

Jynx93

•3 years ago

14 Replies

Covid 3rd vaccine Scotland

Letters have started going out for the 3rd vaccine in Scotland.

EleanorPV

•3 years ago

18 Replies

Hydroxy and hot flushes

Been on hydroxurea for a couple months. Thought I was done with hot flashes (or ‘power surges’ as my hemiotologist calls them) but have been experiencing...

Been on hydroxurea for a couple months. Thought I was done with hot flashes (or ...

Penpal21

•3 years ago

11 Replies

Weight gain and side effects from HU

Has anyone had weight gain from HU? I am on a very strict diet and exercise routine but have gained 10 lbs I can not loose when I started HU. I also have one...

Has anyone had weight gain from HU? I am on a very strict diet and exercise rout...

MDI55

•3 years ago

9 Replies

Stabbing pains

Hi I get like stabbing pain in my hands & feet and stomach then goes in my neck at same time only last a few seconds but it does hurt but only lasted few...

Hi I get like stabbing pain in my hands & feet and stomach then goes in my neck ...

Jody00

•3 years ago

2 Replies

Just diagnosed with diastolic heart failure and I am shocked! Could this be MPN induced?

I have had shortness of breath issues for quite some time. I had a heart ultrasound and pulmonary function test. The ultrasound showed thickening and...

I have had shortness of breath issues for quite some time. I had a heart ultraso...

Wewo01

•3 years ago

14 Replies

Has anyone moved from Pegasys to Ropeg?

Not sure if Ropeg is available in the U.K.? Is anyone here using it?

Paul123456

•3 years ago

6 Replies

Pruritus

Also could diet cause itching (berries etc eg)?

caroline_284

•3 years ago

16 Replies

Pruritus and peginterferon

Does anyone feel their pruritus has worsened while using peginterferon? Also if the itching becomes more bothersome does it mean the illness is getting worse?...

Does anyone feel their pruritus has worsened while using peginterferon? Also if ...

caroline_284

•3 years ago

21 Replies

Any Experience with Pegasys and Wound Healing? UPDATED BELOW

Hello to all you good people, I am a 68 year old male diagnosed with p-vera almost a year ago. I had a series of phlebotomies and have been taking pegasys for...

Hello to all you good people, I am a 68 year old male diagnosed with p-vera almo...

gvibes

•3 years ago

16 Replies

How would you describe your fatigue and bone pain? MPN ET

Mine is like someone beat me up. As for the bone pain, I feel dull, aching, and draining pain. Like there is a device that sucks your bones and muscles.

Mine is like someone beat me up. As for the bone pain, I feel dull, aching, and ...

Anonymous022719-

•3 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2021

Appointment got sorted out eventually & flu,booster jab

New Hospital new start

Good news

Possible JAK2+, wondering what the next steps are?

3rd dose COVID vaccination for MPN patients

Update on BMB

Covid19 booster.

PV and abnormal low protein in blood

Leukaemia care/NHS antibody trial

Besremi - 6 month update

Peg Interferon and flu jab

Jabs

Finally decided to go private.

Myleofibrosis diagnosis

Clinical Trial Update

Problems getting Peg

MPN VOICE FUNDRAISING HEROES UPDATE OCTOBER 2021

Second Opinion

App being closed?

3rd covid booster

Covid 3rd vaccine Scotland

Hydroxy and hot flushes

Weight gain and side effects from HU

Stabbing pains

Just diagnosed with diastolic heart failure and I am shocked! Could this be MPN induced?

Has anyone moved from Pegasys to Ropeg?

Pruritus

Pruritus and peginterferon

Any Experience with Pegasys and Wound Healing? UPDATED BELOW

How would you describe your fatigue and bone pain? MPN ET

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