Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for May 2023

just a question

when I got diagnosed last June with ET and Jak2 they mentioned something abt a trauma now is this physical or mental trauma or was I imagining this , am still...

when I got diagnosed last June with ET and Jak2 they mentioned something abt a t...

Staroftheday

•1 year ago

10 Replies

Oh dear

Good job I checked . Link doesn't work!

Mostew

•1 year ago

2 Replies

Informative article

https://blog.cytoplan.co.uk/category/digestive-disorders/Cytoplan do good suppliments . And lots of interesting blogs on their website

https://blog.cytoplan.co.uk/category/digestive-disorders/Cytoplan do good suppli...

Mostew

•1 year ago

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leg pains around groin an hip

hi lovely friends my platelets have gone to 600 from 100+ am on pegsy now fortnightly but am suffering from bad pains in legs around the top and groin area...

hi lovely friends my platelets have gone to 600 from 100+ am on pegsy now fortni...

Staroftheday

•1 year ago

10 Replies

Can ET & PV Hereditary

Out of curiosity how many of us have family with an MPN, I was always led to believe it was genetic changes in genes as we got older not hereditary, but my...

Out of curiosity how many of us have family with an MPN, I was always led to bel...

Mustang50

•1 year ago

46 Replies

Covid booster

Just wondering if anyone knows if I should be having the next booster. I have ET jak2 positive on aspirin only. My last booster was last September, I have...

Just wondering if anyone knows if I should be having the next booster. I have E...

Penny-10

•1 year ago

18 Replies

What is going on?

Sorry y’all this is about to be a long post because I’m worried & not sure what is going on. I’m 26 years old & have been very healthy my whole life. I’ve...

Sorry y’all this is about to be a long post because I’m worried & not sure what ...

Confusingdisease

•1 year ago

3 Replies

Bloating relief

I've been on hydroxycarbamide now for 2.5 years and although my platelets are looking good (now on 500mg hydrea/day), my belly bloat + few kilos weight gain...

I've been on hydroxycarbamide now for 2.5 years and although my platelets are lo...

Hidden

•1 year ago

16 Replies

JAK+ ET longevity

I was diagnosed ~2.5 months ago. Will this disease ever go away on it’s own? Will I always be on medication? Does anyone know the longevity of this disease?...

I was diagnosed ~2.5 months ago. Will this disease ever go away on it’s own? Wi...

Plate

•1 year ago

29 Replies

Thank you contributors

As you know I've moved from mpns to a sct and tried to find an appropriate forum like this. One on Facebook I looked and tried to use in the same way as this...

As you know I've moved from mpns to a sct and tried to find an appropriate forum...

Scaredy_cat

•1 year ago

8 Replies

Weekly chills after IFN injection

Hi all, I hope everyone is doing as well as can be. Just a quick question for you all, I have had to recently wean off some other medication in the last...

Hi all, I hope everyone is doing as well as can be. Just a quick question for ...

Grendall

•1 year ago

12 Replies

Study Trial for PV who got phlebotomies 3 times in 6 mo

May be any of you interest to e participant https://www.polycythemiavera-clinicaltrial.com/study-criteria

May be any of you interest to e participant https://www.polycythemiavera-clinic...

william-Indo

•1 year ago

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Medication choices after hydroxyurea

I've posted before about the challenges associated with HU and my own efforts to keep my sensitive digestive tract happy over the last 2 plus years....

I've posted before about the challenges associated with HU and my own efforts to...

saltmarsh

•1 year ago

22 Replies

update

we’ll I had THE meeting with my haematologist yesterday with my son supporting me. Our meeting lasted the best part of 2 hours (!) during which we thrashed...

we’ll I had THE meeting with my haematologist yesterday with my son supporting m...

beetle

•1 year ago

21 Replies

Insure

Has anyone had travel insurance with ET +jak 2 and taking blood pressure tablets

Has anyone had travel insurance with ET +jak 2 and taking blood pressure tablets...

ChillyAsh34

•1 year ago

3 Replies

A very special interview with Nona Baker Co Chair of MPN Voice & Professor Claire Harrison

In this interview Professor Claire Harrison shares breaking news with up to date results from the MAJIC PV Study. Following a recent media article it also...

In this interview Professor Claire Harrison shares breaking news with up to date...

Debinha

Administrator•1 year ago

7 Replies

ET and periods/menstruation

Hi - this is a question for those of you who have monthly periods, (or were still menstruating when you were diagnosed). I was diagnosed several months...

Hi - this is a question for those of you who have monthly periods, (or were sti...

junebuggy

•1 year ago

16 Replies

Bone marrow edema not healing

Hi, Recently diagnosed with JAK2+ ET / possible pre-fibrotic myelofibrosis a month or so ago. Platelets have been consistently high since 2015, so I suspect...

Hi, Recently diagnosed with JAK2+ ET / possible pre-fibrotic myelofibrosis a mo...

WRLM

•1 year ago

5 Replies

Rusfertide...

I haven't come across any dialog about this drug on this website. It popped up on my many searches for additional info about treatment for Polycythemia...

I haven't come across any dialog about this drug on this website. It popped u...

K-itty

•1 year ago

2 Replies

ET and bone marrow biopsy

Hi , I have ET , was diagnosed 2020 , I suffer with terrible fatigue and bone pain is only way I can describe it , I’m having a bone marrow biopsy in July ,...

Hi , I have ET , was diagnosed 2020 , I suffer with terrible fatigue and bone pa...

J-fd

•1 year ago

31 Replies

Frequent traveler dealing with ET and concerns

Hello everybody, I was diagnosed with ET (presumably at least) 6 years ago. I started with Anagrelide and found it did not work for me since I developed heart...

Hello everybody, I was diagnosed with ET (presumably at least) 6 years ago. I s...

marinescientist

•1 year ago

9 Replies

EPO testing

Hi, my wife has MF and has been having RBC transfusions reasonably often, I did ask her consultant if he had ever checked her baseline EPO levels, I didn't get...

Hi, my wife has MF and has been having RBC transfusions reasonably often, I did ...

jointpain

•1 year ago

19 Replies

Besremi Dose

I recently posted a survey on what dose members are on. Plan was to make a plot for us to compare to last year. Unfortunately there were fewer on-topic...

I recently posted a survey on what dose members are on. Plan was to make a plot...

EPguy

•1 year ago

2 Replies

Myelofibrosis and fedratinib

Just needing a bit of a moan. I've had high risk MF now for many years. Last year I was assessed for STC transplant but was told I was not robust enough so as...

Just needing a bit of a moan. I've had high risk MF now for many years. Last yea...

Bullace

•1 year ago

26 Replies

Any issues with spring Covid booster jabs?

Hi folks I’ve reluctantly booked a booster jab for tomorrow after having issues with the last two Moderna jabs, which both rendered me bed bound for a couple...

Hi folks I’ve reluctantly booked a booster jab for tomorrow after having issue...

PT99

•1 year ago

22 Replies

Life beyond Myelofibrosis

I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to...

I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged s...

Scaredy_cat

•1 year ago

55 Replies

interesting article

Hi folks did anyone else see this article in the Sunday Mail, very interesting.

Hi folks did anyone else see this article in the Sunday Mail, very interesting. ...

Superwoman

•1 year ago

16 Replies

Lasbrisas

I started sprinkling Cayenne Red Pepper on my food, MY GOOD NEWS .....BROUGHT DOWN MY FULL BLOOD COUNT THIS MONTH BY 200 POINTS FOR MY PLATELETS, ONE MONTH...

I started sprinkling Cayenne Red Pepper on my food, MY GOOD NEWS .....BROUGHT DO...

Lasbrisas1

•1 year ago

66 Replies

Debating about starting Interferon

I have had PV for about 4 months now & have been pretty much asymptotic aside from numbness in my left foot and left hand (which is pretty scary &...

I have had PV for about 4 months now & have been pretty much asymptotic aside fr...

Nrl303

•1 year ago

28 Replies

New evidence on the early treatment of low-risk PV patients (using IFN)

I saw this article: Final results from the Low PV study now published in the NEJM Evidence...

I saw this article: Final results from the Low PV study now published in the NEJ...

Joey1025

•1 year ago

3 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2023

just a question

Oh dear

Informative article

leg pains around groin an hip

Can ET & PV Hereditary

Covid booster

What is going on?

Bloating relief

JAK+ ET longevity

Thank you contributors

Weekly chills after IFN injection

Study Trial for PV who got phlebotomies 3 times in 6 mo

Medication choices after hydroxyurea

update

Insure

A very special interview with Nona Baker Co Chair of MPN Voice & Professor Claire Harrison

ET and periods/menstruation

Bone marrow edema not healing

Rusfertide...

ET and bone marrow biopsy

Frequent traveler dealing with ET and concerns

EPO testing

Besremi Dose

Myelofibrosis and fedratinib

Any issues with spring Covid booster jabs?

Life beyond Myelofibrosis

interesting article

Lasbrisas

Debating about starting Interferon

New evidence on the early treatment of low-risk PV patients (using IFN)

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