Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for February 2023

MPN Voice Patients’ Forum – Newcastle-upon-Tyne Friday 13 October 2023

1.30 pm – 5 pm (arrival/registration from 1 pm with buffet lunch) Venue: The Royal Station Hotel, Neville Street, Newcastle-upon-Tyne NE1 5DH THIS IS AN...

1.30 pm – 5 pm (arrival/registration from 1 pm with buffet lunch) Venue: The Ro...

Mazcd

Partner•2 years ago

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MPN Voice Patients’ Forum in-person – Llandudno Friday 22 September 2023

1.00 pm – 5 pm (arrival/registration from 1 pm with buffet lunch) Venue: The Imperial Hotel, Vaughan Street, The Promenade, Llandudno LL30 1AP THIS IS AN...

1.00 pm – 5 pm (arrival/registration from 1 pm with buffet lunch) Venue: The Im...

Mazcd

Partner•2 years ago

Be the first to reply

MPN Voice patients’ forum – Galway Saturday 24 June

10.00 am – 4.30 pm (arrival/registration from 10 am with tea/coffee/pastries) The Galway Bay Hotel, The Promenade, Salthill, Galway H91 W295 THIS IS AN...

10.00 am – 4.30 pm (arrival/registration from 10 am with tea/coffee/pastries) T...

Mazcd

Partner•2 years ago

3 Replies

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MPN Voice ‘virtual’ forum – updates and latest research from the ASH annual meeting

Thursday 30 March 2023 4.30 – 6 pm (16:30 – 18:00 hrs) (BST) REGISTRATION NOW OPEN! This MPN Voice ‘virtual’ forum will focus on updates and latest...

Thursday 30 March 2023 4.30 – 6 pm (16:30 – 18:00 hrs) (BST) REGISTRATION NOW O...

Mazcd

Partner•2 years ago

Be the first to reply

Acupuncture, ET and Platelets

Hi and good afternoon. Does anybody have any experience/knowledge/ know of any research in relation to lowering platelets especially with acupuncture? I...

Hi and good afternoon. Does anybody have any experience/knowledge/ know of a...

Pustina

•2 years ago

18 Replies

Help! Stay sure are trying to withdraw my holiday insurance

Hi, Hoping someone can help I have an annual multi trip holiday insurance with Staysure. I bought it a few years ago because it was recommended on this forum....

Hi, Hoping someone can help I have an annual multi trip holiday insurance with ...

SueYoung

•2 years ago

13 Replies

PV and Sore legs

At the moment lm on no meds except warfrin and indepamide. My consultant stopped Peg Interferon l must say it was a releif. Side effects are still a problem in...

At the moment lm on no meds except warfrin and indepamide. My consultant stopped...

Hidden

•2 years ago

7 Replies

Health Tracker

What does everyone use to track your health, symptoms, side effects, medication, etc? Do you use a spreadsheet or App? Would you be willing to share what you...

What does everyone use to track your health, symptoms, side effects, medication,...

Zeppelin11

•2 years ago

7 Replies

chills

hi all Iv felt bit shivery and tired last few days got appointment on weds with my consultant first time Iv felt like this since diagnosed last august anyone...

hi all Iv felt bit shivery and tired last few days got appointment on weds with ...

Cat1001954

•2 years ago

9 Replies

Cellulitis and ET

I’ve seen a nurse at my GP practice today (no doctors in!) I’ve got red swollen lower legs, that feel warm. She said it’s cellulitis and I’ve got antibiotics...

I’ve seen a nurse at my GP practice today (no doctors in!) I’ve got red swollen ...

lizzziep

•2 years ago

12 Replies

ET JAK2 Now Starting Peg Via IV?

First Hydroxyurea and horrible severe side effects overwhelmed me. Switched to Anagrelide with less intense side effects on low dose but upon dose increase...

First Hydroxyurea and horrible severe side effects overwhelmed me. Switched to ...

Mishie14

•2 years ago

13 Replies

Knee replacement fears while having PV

Hi everyone, love reading all your posts and they are so informational. I know this topic has been discussed before but thought I'd inquire again regarding...

Hi everyone, love reading all your posts and they are so informational. I know t...

ritaandscooter1

•2 years ago

12 Replies

autoimmune mf (AMF)

Is anyone diagnosed with this ? Were you misdiagnosed with primary MF before that? How did you get a diagnosis of AMF? My consultant said there is no test for...

Is anyone diagnosed with this ? Were you misdiagnosed with primary MF before tha...

Bakerloo73

•2 years ago

1 Reply

reactive thrombocytosis, headache, hip pain, platlets 580x Esr 22 and pcr 7.7 hellllpppppp!

I have been having headaches for 8 weeks along with front hip pain (not sure if they are related) I had bloods taken and was given all normal apart from high...

I have been having headaches for 8 weeks along with front hip pain (not sure if ...

Bowbow7

•2 years ago

17 Replies

Using a sun bed with PV

Hi Does Anyone use a Sun bed before they go on holiday with PV diagnosis ?

Hi Does Anyone use a Sun bed before they go on holiday with PV diagnosis ? ...

Blonde25

•2 years ago

3 Replies

Eye pain

Has anyone had eye pain that improved once they began treatment? I have eye pain in only right eye, I have seen ophthalmologist. retina specialist, and...

Has anyone had eye pain that improved once they began treatment? I have eye pain...

Bears23

•2 years ago

11 Replies

Symptoms of ET

I just returned from a lovely vacation in Puerto Rico. Just before boarding the plane I noticed my ankles were red and swollen and my legs were red as well. I...

I just returned from a lovely vacation in Puerto Rico. Just before boarding the ...

Mtnlife

•2 years ago

9 Replies

Any value seeing a gastroenterologist for ET belly bloat?

Greetings All, I've made an appointment to consult with a visiting gastroenterologist for my permanent belly bloat and weight gain (about 4 kg over the past...

Greetings All, I've made an appointment to consult with a visiting gastroenter...

Hidden

•2 years ago

9 Replies

Ocular migraines and red eyes

Does anyone have problems in our situation with ocular migraines and red eyes after sleep? Can anyone share their experience with this? Thank you! I would...

Does anyone have problems in our situation with ocular migraines and red eyes af...

Softy125

•2 years ago

9 Replies

Does High symptom burden mean aggresive cancer?

Dear fellow warriors.I have posted here before, I'm following up because i got some help to meet a possible mpn specialist thanks to admin here. You've all...

Dear fellow warriors.I have posted here before, I'm following up because i got s...

Xuzy

•2 years ago

8 Replies

Hi, does anyone use inteferon and turmeric? Is it good or is it counterproductive? Thanks

Interferón anda tumeric

Mercedeshm

•2 years ago

9 Replies

Dizziness

I have had ET for over 4 years, been on Hydroxycarbamide with no adverse effects.The last couple of months I have been getting increasingly lightheaded and...

I have had ET for over 4 years, been on Hydroxycarbamide with no adverse effects...

Pippapot

•2 years ago

10 Replies

First dose of Peg

Its 5 days since I took my first dose of Peg (.45) and I’ve had a pretty mixed week. The first 24 hours I felt incredibly sick, could eat much, only drank...

Its 5 days since I took my first dose of Peg (.45) and I’ve had a pretty mixed w...

RazB

•2 years ago

30 Replies

Anagrelide side effects

Hi everyoneI've been taking Anagrelide for 6 weeks now and I'm putting on a lot of weight suddenly, especially in my face. Plus a thumping heart sometimes....

Hi everyoneI've been taking Anagrelide for 6 weeks now and I'm putting on a lot ...

Sivasi

•2 years ago

8 Replies

Interferon-Alpha 2-a and Its Dual Effect in Treating Two Diseases (Hepatitis C and Polycythemia Vera)

»Here, we report a 56-years-old male patient with hepatitis C virus infection and PV, who was treated with IFN for his chronic hepatitis C, which resulted in...

»Here, we report a 56-years-old male patient with hepatitis C virus infection a...

Manouche

•2 years ago

4 Replies

ET JAK2 Positive

Hello I am new here. Recently Diagnosed with ET JAK2 after months persistent headaches which were treated for migraines , unexplained fatigue rendered me...

Hello I am new here. Recently Diagnosed with ET JAK2 after months persistent hea...

Afya23

•2 years ago

19 Replies

Progression to MF

Hi All, I had a BMB in early January and the results show level 1 Post ET MF . The results of the genetic tests have apparently “failed “ but it is my...

Hi All, I had a BMB in early January and the results show level 1 Post ET MF ...

UKZA

•2 years ago

8 Replies

anti-inflammatory drugs

I need an anti-inflammatory and I am on aspirin so can only take tylenol/paracetamol normally. I am currently in America, does anyone know of any...

I need an anti-inflammatory and I am on aspirin so can only take tylenol/paracet...

Trainer12

•2 years ago

20 Replies

increased Peg interferon

Hi all, So I have had my routine hospital appointment this morning. I am on Peg interferon. I started on it at 65ml in August last year, my platelets have...

Hi all, So I have had my routine hospital appointment this morning. I am on Pe...

Grendall

•2 years ago

16 Replies

Update on my polycythemia vera diagnosis

I have received my hospital consultant letter from the GP and I'm still trying to understand the blood counts etc . Jack 2 positive polycythemia vera with...

I have received my hospital consultant letter from the GP and I'm still trying ...

Blonde25

•2 years ago

19 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2023

MPN Voice Patients’ Forum – Newcastle-upon-Tyne Friday 13 October 2023

MPN Voice Patients’ Forum in-person – Llandudno Friday 22 September 2023

MPN Voice patients’ forum – Galway Saturday 24 June

MPN Voice ‘virtual’ forum – updates and latest research from the ASH annual meeting

Acupuncture, ET and Platelets

Help! Stay sure are trying to withdraw my holiday insurance

PV and Sore legs

Health Tracker

chills

Cellulitis and ET

ET JAK2 Now Starting Peg Via IV?

Knee replacement fears while having PV

autoimmune mf (AMF)

reactive thrombocytosis, headache, hip pain, platlets 580x Esr 22 and pcr 7.7 hellllpppppp!

Using a sun bed with PV

Eye pain

Symptoms of ET

Any value seeing a gastroenterologist for ET belly bloat?

Ocular migraines and red eyes

Does High symptom burden mean aggresive cancer?

Hi, does anyone use inteferon and turmeric? Is it good or is it counterproductive? Thanks

Dizziness

First dose of Peg

Anagrelide side effects

Interferon-Alpha 2-a and Its Dual Effect in Treating Two Diseases (Hepatitis C and Polycythemia Vera)

ET JAK2 Positive

Progression to MF

anti-inflammatory drugs

increased Peg interferon

Update on my polycythemia vera diagnosis

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