Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for July 2024

Tilt Table Test

Well, on Thursday I had a Tilt Table test and it was positive. My blood pressure rose to 185/110 before taking a nosedive to 80/54 with me on the verge of...

Well, on Thursday I had a Tilt Table test and it was positive. My blood pressure...

Wewo01

•10 hours ago

10 Replies

smoking and PV

I was reading the obituary to the American comedian Bob Newhart who has just died at 94 and one statement puzzled me . "He developed polycythemia at he age of...

I was reading the obituary to the American comedian Bob Newhart who has just die...

catkinspolymer

•17 hours ago

3 Replies

Falling asleep in the morning

I don't understand why I keep falling asleep after breakfast. It has begun recently after about 4 pm but now, while I'm waking up at the sort of time everyone...

I don't understand why I keep falling asleep after breakfast. It has begun rece...

MaggieSylvie

•19 hours ago

1 Reply

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Leg cramps

I drink a lot of Matcha tea with honey, also squash. One coffee breakfast but I still get cramp. My feet feel as they try to curl under, legs then feel heavy...

I drink a lot of Matcha tea with honey, also squash. One coffee breakfast but I ...

mag123ben

•22 hours ago

2 Replies

Keto diet

Hi there can anyone advise me please. I have ET with MPL and someone I know is trying to convince me to go on the keto diet ( high fat, low carb) because of...

Hi there can anyone advise me please. I have ET with MPL and someone I know is t...

Fairydust1111

•2 days ago

43 Replies

Hydroxy to Peg Interferon

Having seen my haem on Thurs and explaing some of the symptoms/side effects I have recently been experiencing (long bone pain, ‘fizzy’ hot feet, mouth ulcers,...

Having seen my haem on Thurs and explaing some of the symptoms/side effects I ha...

Polly-PV

•2 days ago

14 Replies

critical illness claim

Wondered if people had recently been successful with claims under their critical illness policy for PV. I noticed the insurance company have sent a standard...

Wondered if people had recently been successful with claims under their critical...

Scaredalone

•2 days ago

5 Replies

Shortage of Pegasys Interferon

We are aware that some countries may be experiencing a shortage in the supply of Pegasys Interferon and would like to reassure you various UK Health Bodies and...

We are aware that some countries may be experiencing a shortage in the supply of...

Mazcd

Partner•2 days ago

3 Replies

Allele Burden -- Polycythemia Vera

Can someone please explain what is the Allele Burden ? Should I be having a regular measurement, by means of a blood test ,to monitor the progress of the...

Can someone please explain what is the Allele Burden ? Should I be having a reg...

Hilary777

•2 days ago

13 Replies

Secondary polycythemia

Hi Ive just joined, I have quite bad asthma and was reffered to a clinc without did various blood tests and found raised hb and heaomocrit levels and i then...

Hi Ive just joined, I have quite bad asthma and was reffered to a clinc without ...

jamieb977

•3 days ago

12 Replies

Tinnitus

My diagnosis is at the moment, ET,Early Primary Mylofibrosis. Over the past 6 months I have developed what is called pulsitile tinnitus. I can hear my heart...

My diagnosis is at the moment, ET,Early Primary Mylofibrosis. Over the past 6 mo...

Strumin210

•3 days ago

4 Replies

local mpn specialist

hi after reading various posts it is recommended that you see a MPN specialist I am in Essex Chelmsford/Romford area but can’t find local specialist

hi after reading various posts it is recommended that you see a MPN specialist ...

Jillympn

•3 days ago

21 Replies

Peg Shortage?

So got a full debrief from my MPN specialist today on the situation with Peg in country (Israel). It seems that a company called Pharma& (an Austrian company I...

So got a full debrief from my MPN specialist today on the situation with Peg in ...

Solyesh

•4 days ago

8 Replies

ET-JAK2 with platelet count 380

Hello, My platelet count is good, i was biopsy positive for Jak2. My hands and feet swell at night and i wake up with terrible tingling in my right hand and...

Hello, My platelet count is good, i was biopsy positive for Jak2. My hands and f...

03271115

•4 days ago

2 Replies

Great progress on Pegasys!

I’ve been on Pegasys for 16 months. When I started, my JAK-2 Allele burden was 29%. Today it is 14%! I was one of the folks who needed a higher dose of Peg...

I’ve been on Pegasys for 16 months. When I started, my JAK-2 Allele burden was 2...

Minify

•4 days ago

29 Replies

tremors

hello wonderful forum. I am ETjak2, diagnosed Jan of 22 On 5 HU a week. About when I started HU I noticed my right hand trembling occasionally when I grabbed...

hello wonderful forum. I am ETjak2, diagnosed Jan of 22 On 5 HU a week. About ...

Pounds11

•5 days ago

5 Replies

Searching for a patient peer

While the forum is a great source of information, support and advice. I'm feeling very "special" for the lack of a better work. It would be great to connect...

While the forum is a great source of information, support and advice. I'm feelin...

Hatchie

•5 days ago

2 Replies

MPN and vision problems

Hi all I'd like to ask if anyone has experienced vision problems associated with their MPN? I have ET (Jak2+) and in recent months have had frequent/daily...

Hi all I'd like to ask if anyone has experienced vision problems associated wit...

junebuggy

•6 days ago

9 Replies

ET and Successful Hip Replacement

Hello friends, I posted some months ago about needing hip replacement for arthritis, and I appreciate the many replies I received. I am 5 weeks out from my...

Hello friends, I posted some months ago about needing hip replacement for arthr...

Indigo42916

•6 days ago

13 Replies

results of nail biopsy

At the end of last week I got my results of my nail biopsies. It is no fungus, no infection and best of all no cancer. They do not know what it actually is...

At the end of last week I got my results of my nail biopsies. It is no fungus, ...

artydutch

•6 days ago

10 Replies

What are the stages of myelofibrosis

My husband of 81 was diagnosed with myelofibrosis last week after having Jack2 negative essential thrombocythaemia since 2009. His consultant will be watching...

My husband of 81 was diagnosed with myelofibrosis last week after having Jack2 n...

Richinspirit

•6 days ago

8 Replies

question/new info/latest

Helllo! Hoping everyone is doing ok and hanging in there. I had a positive echo stress test. My insurance denied the oncologists request so had an echo...

Helllo! Hoping everyone is doing ok and hanging in there. I had a positive e...

MPNJunebug

•6 days ago

4 Replies

Sore feet

Hi does anyone suffer from a burning sensation in ther feet it's not all the time as it comes and goes feet are not swollen but are just stinging and burning...

Hi does anyone suffer from a burning sensation in ther feet it's not all the tim...

VTAR24

•7 days ago

10 Replies

Besremi Update

I have been on Besremi since May 2023, now consistently at 500 mcg. So far it has brought my platelets under control where they have remained 200-300...

I have been on Besremi since May 2023, now consistently at 500 mcg. So far it ...

Luthorville

•7 days ago

24 Replies

ET symptoms

I was diagnosed with essential thrombosis in 2019. I had a bloody Marrow biopsy. And came back positive for the Jack2 mutation. My platelet count has been...

I was diagnosed with essential thrombosis in 2019. I had a bloody Marrow biopsy...

03271115

•7 days ago

8 Replies

Insect bites

I have had a few mosquitoes bites lately and I have never experienced such discomfort with hitching. Wondering if hydroxycarbamide has anything to do with...

I have had a few mosquitoes bites lately and I have never experienced such disco...

Cokopops

•7 days ago

12 Replies

PV and common Cold

Morning all, Only diagnosed with PV since Nov 23. Low risk as im 38 and platelets have stopped increasing since the introduction of aspirin and a few other for...

Morning all, Only diagnosed with PV since Nov 23. Low risk as im 38 and platelet...

Headaball

•7 days ago

9 Replies

Pegasys skin?

Has anyone else had their skin turn into rough, dry, chicken skin on large parts of their bodies after taking Pegasys? Mine started out with itchiness, and now...

Has anyone else had their skin turn into rough, dry, chicken skin on large parts...

dogsandhorses

•8 days ago

8 Replies

post deleted

I have deleted my post as was not getting any help

130396

•8 days ago

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Muscle pain

Good morning. I am getting pretty debilitating muscle pain in my core - around my groin and up above. I think maybe these are my rectus abdominis muscles. It’s...

Good morning. I am getting pretty debilitating muscle pain in my core - around m...

Huginn

•8 days ago

13 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2024

Tilt Table Test

smoking and PV

Falling asleep in the morning

Leg cramps

Keto diet

Hydroxy to Peg Interferon

critical illness claim

Shortage of Pegasys Interferon

Allele Burden -- Polycythemia Vera

Secondary polycythemia

Tinnitus

local mpn specialist

Peg Shortage?

ET-JAK2 with platelet count 380

Great progress on Pegasys!

tremors

Searching for a patient peer

MPN and vision problems

ET and Successful Hip Replacement

results of nail biopsy

What are the stages of myelofibrosis

question/new info/latest

Sore feet

Besremi Update

ET symptoms

Insect bites

PV and common Cold

Pegasys skin?

post deleted

Muscle pain

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