Posts - MPN Voice | HealthUnlocked

MPN Voice

10,524 members • 14,540 posts

All posts for March 2023

How bad is the itching?

People with pv , how many years into diagnosis did you experience itching?Anyone 10 years or more into the disease and still experience it with controlled...

People with pv , how many years into diagnosis did you experience itching?Anyone...

Xuzy

•1 year ago

16 Replies

New to the community - Aspirin side effects for ET

Hi all, Just joined the HealthUnlocked MPN Voice community :) I have had an ET diagnosis for the past 3 years and have been prescribed low dose Aspirin for...

Hi all, Just joined the HealthUnlocked MPN Voice community :) I have had an ET...

ET_Gooner

•1 year ago

22 Replies

Anagrelide problems

Hello everyoneFor the last 6 weeks I've been taking Anagrelide for ET. Since I've started the Anagrelide my legs and ankles have swollen up. Has anybody else...

Hello everyoneFor the last 6 weeks I've been taking Anagrelide for ET. Since I'...

Sivasi

•1 year ago

3 Replies

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bone marrow

I’ve got essential thrombocythemia jak 2 positive I’ve been on hydroxycarbamide for 8 years had my spleen out in 2014 I’ve had lots of problems associated...

I’ve got essential thrombocythemia jak 2 positive I’ve been on hydroxycarbamide ...

Phil1955

•1 year ago

1 Reply

HRT and MPN

Hi there,I've been recently diagnosed with Essential Thrombothycemia and Polythycemia Vera. I'm also Jak2 positive. I've just had my bonemarrow biopsy and will...

Hi there,I've been recently diagnosed with Essential Thrombothycemia and Polythy...

YogaRonnie

•1 year ago

17 Replies

Myelofibrosis

I see alot of posts regarding PV and ET.Can anyone share some feedback on mylepfibrosis? At first, I was diagnosis with ET, but after a second BMB my...

I see alot of posts regarding PV and ET.Can anyone share some feedback on mylep...

Hidden

•1 year ago

15 Replies

life expectancy for under 60’s

https://healthunlocked.com/fight-mpn/posts/140703787/information-on-mpn The life expectancy is a bit shocking on this article - I’m confused - and a lot...

https://healthunlocked.com/fight-mpn/posts/140703787/information-on-mpn The li...

Carthe

•1 year ago

12 Replies

Blood pressure

I saw a poster at the GPs about blood pressure, basically it said keep your blood pressure down and you won’t have a stroke or blood clots. I’m wondering if...

I saw a poster at the GPs about blood pressure, basically it said keep your blo...

Joetcalr

•1 year ago

18 Replies

Switching from hydroxy carbamide to Peg interferon

Greetings All, I'd like your opinion about a considered change of meds from hydroxycarbamide to peg interferon that I take for my ET. I've been on hydroxy...

Greetings All, I'd like your opinion about a considered change of meds from hyd...

Hidden

•1 year ago

9 Replies

ET and platelet rich plasma treatment

Recently saw an orthopaedic specialist about an old sports injury to my knee and one of his recommendations was PRP treatment. Just wondered if anyone on here...

Recently saw an orthopaedic specialist about an old sports injury to my knee and...

Amethist

•1 year ago

10 Replies

Answers on a postcard please!

thoughts… if tests come back negative for any genetic faults and platelets are upper range but normal what would you do? Last one yesterday 436…highest has...

thoughts… if tests come back negative for any genetic faults and platelets are u...

Carthe

•1 year ago

17 Replies

dull ache under left shoulder blade

hi. my husband has been having a dull ache like feeling under left shoulder blade for the past month or so could this be Et related? thanks

hi. my husband has been having a dull ache like feeling under left shoulder bla...

Green1988

•1 year ago

9 Replies

Undiagnosed after 17yrs!!!

I’ve been told by my new consultant that I don’t have an MPN because the BMB came back inconclusive so she doesn’t have a diagnosis of PV for me. Even though...

I’ve been told by my new consultant that I don’t have an MPN because the BMB cam...

Lrover

•1 year ago

13 Replies

Besremi trial for ET

https://www.businesswire.com/news/home/20230223005186/en/PharmaEssentia-Initiates-Phase-2b-Trial-of-ropeginterferon-alfa-2b-njft-for-Essential-Thrombocythemia-E

https://www.businesswire.com/news/home/20230223005186/en/PharmaEssentia-Initiate...

wateron

•1 year ago

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Besremi info

https://www.businesswire.com/news/home/20230202005200/en/Clinical-Review-of-ropeginterferon-alfa-2b-Suggests-Amended-Dosing-Schedule-May-Support-Improved-Clinic

https://www.businesswire.com/news/home/20230202005200/en/Clinical-Review-of-rope...

wateron

•1 year ago

1 Reply

Treating leukocytosis in PV

I was diagnosed with PV in 2015 and I am JAK2 positive. I've been on Jakafi for about six months, and my current dosage of 10 mg/day seems to be doing a good...

I was diagnosed with PV in 2015 and I am JAK2 positive. I've been on Jakafi for ...

sbs_patient

•1 year ago

25 Replies

Pegasys

Hello Family Just started my pegasys injections today @ 45mcg. Also had a BMB, waiting for results . Wish me luck 🍀😉

Hello Family Just started my pegasys injections today @ 45mcg. Also had a BMB, ...

Afya23

•1 year ago

20 Replies

Beware of my platelet count!

I think it’s safe to say that no one better mess with me TODAY! 😈

Barbiebreath

•1 year ago

22 Replies

question of the day!

does asprin actually lower platelets or just stop them sticking? Thank you 😀

Carthe

•1 year ago

4 Replies

Advice please

Hi everyone. I was diagnosed with triple negative ET in February 2021, age 69, with platelets around 1000. I was prescribed HU taking 1g and 1.5g on...

Hi everyone. I was diagnosed with triple negative ET in February 2021, age 69, ...

EdwinaJ

•1 year ago

3 Replies

Sudden increase in platelets while on Hydroxy

Hello, I am trying not to ask questions too often, but today can't sleep because I am concerned. I am on Hydroxy since almost 6 years for PV. After initial...

Hello, I am trying not to ask questions too often, but today can't sleep becaus...

love0826

•1 year ago

12 Replies

next question is about itchiness

can people tell me a bit more about this… does it just happen after baths / showers or other times too and where is is generalised or in specific places? I...

can people tell me a bit more about this… does it just happen after baths / show...

Carthe

•1 year ago

36 Replies

Progression Question/Experiences

Hello everyone, I’ll try to keep this short. I was diagnosed with ET in March of 2020. My platelet levels were well above the 600 mark and after biopsy ET...

Hello everyone, I’ll try to keep this short. I was diagnosed with ET in March ...

924-924

•1 year ago

8 Replies

diagnosis

hi I would love to get an idea of blood levels and symptoms and age (if you want to tell that) at diagnosis? X

hi I would love to get an idea of blood levels and symptoms and age (if you want...

Carthe

•1 year ago

23 Replies

Resuts of Ultrasound

There is a mass on my left ovary and a sot on my liver. Next step is an MRI. I am cursed. And I thought having an MPN was bad. Don't know what the future...

There is a mass on my left ovary and a sot on my liver. Next step is an MRI. I a...

Mtnlife

•1 year ago

4 Replies

Susceptible

I was just wondering if we are more susceptible to autoimmune disorders.

ciye

•1 year ago

8 Replies

MPN, Pegasys and Hypothyroidism

Hi gang! Has anyone experienced thyroid issues while on Pegasys? I did some routine bloodwork this week and to my surprise my TSH levels (thyroid) was off...

Hi gang! Has anyone experienced thyroid issues while on Pegasys? I did some r...

Emmyroos

•1 year ago

6 Replies

Abnormal Cologuard Test

Anyone know if having PV would cause an abnormal Cologuard test?

LIGEBA

•1 year ago

3 Replies

open to other cancers?

hi Everyone Quick question on you do have a MPN are you more at risk of getting other cancers compared to someone who doesn’t have a MPN? Thank you

hi Everyone Quick question on you do have a MPN are you more at risk of getting...

Carthe

•1 year ago

23 Replies

Besremi trial

Two New Trials Testing Ropeginterferon (Besremi) in PV and ETMar 3, 2023John Mascarenhas, MDAssociate Professor & Director of the Adult Leukemia Program0...

Two New Trials Testing Ropeginterferon (Besremi) in PV and ETMar 3, 2023John Mas...

wateron

•1 year ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2023

How bad is the itching?

New to the community - Aspirin side effects for ET

Anagrelide problems

bone marrow

HRT and MPN

Myelofibrosis

life expectancy for under 60’s

Blood pressure

Switching from hydroxy carbamide to Peg interferon

ET and platelet rich plasma treatment

Answers on a postcard please!

dull ache under left shoulder blade

Undiagnosed after 17yrs!!!

Besremi trial for ET

Besremi info

Treating leukocytosis in PV

Pegasys

Beware of my platelet count!

question of the day!

Advice please

Sudden increase in platelets while on Hydroxy

next question is about itchiness

Progression Question/Experiences

diagnosis

Resuts of Ultrasound

Susceptible

MPN, Pegasys and Hypothyroidism

Abnormal Cologuard Test

open to other cancers?

Besremi trial

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