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MPN Voice

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Back pain and ET

Hi Everyone Just joined the group. I'm 45 and from the UK. I have just been diagnosed with ET following raised platelets after suffering a cardiac arrest in...

Hi Everyone Just joined the group. I'm 45 and from the UK. I have just been diag...

Alan_P

•11 hours ago

2 Replies

Am I looking too hard?

Hi all, New to this part of the forum... I've recently met some wonderful helpful people on some of the other forums here at health unlocked though and very...

Hi all, New to this part of the forum... I've recently met some wonderful helpfu...

Entwicklung

•17 hours ago

7 Replies

Jakafi and it's side effects?

From what little I understand, Jakafi can and does reduce the fibrosis within the bone marrow while reducing the allele burden (number/percentage of dodgy...

From what little I understand, Jakafi can and does reduce the fibrosis within th...

jointpain

•19 hours ago

4 Replies

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Night sweats, curry and beer?!

I'm really interested in views or experiences as to what triggers night sweats please?I have post ET MF, agreed 53, diagnosed ET when I was 30. Last night I...

I'm really interested in views or experiences as to what triggers night sweats p...

Pwatson

•1 day ago

9 Replies

hu and asprin

hi - hunters advice seems very thorough. the red flag would be the asprin not the hu. agree a good nutritionist or herbalist may be able to offer some help...

hi - hunters advice seems very thorough. the red flag would be the asprin not th...

Lemonverbena

•2 days ago

Be the first to reply

Advice please

I find myself unsure how to proceed and any tips/experience gratefully received. I was reviewed by telephone this week by a consultant in the MPN service where...

I find myself unsure how to proceed and any tips/experience gratefully received....

Imkerin

•2 days ago

5 Replies

Hydroxycarbamide and Driving?

Hello friends, In November last year I started Hydroxycarbamide 500 mg capsules and, with any new medication, I thoroughly read the packet leaflet. This is...

Hello friends, In November last year I started Hydroxycarbamide 500 mg capsules ...

bluebird567

•2 days ago

11 Replies

statins

hi Wondering whether anyone has experience of going on statins ? I was diagnosed with polycythaemia 2017, until 2022 was on aspirin and venesections, then as...

hi Wondering whether anyone has experience of going on statins ? I was diagnos...

Sanga

•2 days ago

6 Replies

Splitting a syringe

I’ve just read an interesting response in another thread regarding splitting a syringe over two injections, which has got me thinking. Due to the Pegasys...

I’ve just read an interesting response in another thread regarding splitting a s...

Huginn

•2 days ago

9 Replies

Break from Pegasys Interferon

Following a diagnosis of mild Sjorens my consultant is recommending another jak2 allele burden test ( yes in uk you can now ask for another one rather than be...

Following a diagnosis of mild Sjorens my consultant is recommending another jak2...

Looolooo

•2 days ago

5 Replies

Modbury123

Hi Does anyone know if you are taking Hydroxycarbamide it is advisable not to take Ibuprofen or anti inflammatory I am thinking I have read this somewhere....

Hi Does anyone know if you are taking Hydroxycarbamide it is advisable not to ...

Modbury123

•2 days ago

6 Replies

restless leg syndrome, and PV

been diagnosed with Pv for about 12 years. Recent tests have shown thankfullythat I do not have myelofibrosis. I am 71 and in good spirits rather good...

been diagnosed with Pv for about 12 years. Recent tests have shown thankfully...

chopinesque

•2 days ago

1 Reply

Momelotinib

Hi After all the avoidable stress of getting bloods done at Guys, when I had my telephone con on Monday (- half an hour earlier than expected - good thing...

Hi After all the avoidable stress of getting bloods done at Guys, when I had ...

Gipsy123

•2 days ago

2 Replies

functional medical practitioner

Thank you hunter. That was very useful

Linnie5

•3 days ago

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Switching from Pegasys to Besremi

Hi everyone, I have just been advised that I will need to switch from Pegasys to Besremi due to the UK shortage. Please could anyone who has made the switch...

Hi everyone, I have just been advised that I will need to switch from Pegasys to...

OceanR

•3 days ago

7 Replies

Update 8.6 - Multiple doc meetings

I had a follow-up MRI and met with my Neurologist/NF Specialist yesterday. There is no sign of recurrence of the brain tumor. In fact, it seems I have a...

I had a follow-up MRI and met with my Neurologist/NF Specialist yesterday. Ther...

hunter5582

•3 days ago

40 Replies

New! advances in the role of JAK2 V617F mutation in myeloproliferative neoplasms (MPN)

Hello, I purchased this white paper, but not sure I can share online. If you send me a message, I'll forward you the PDF. Here is the summary online:...

Hello, I purchased this white paper, but not sure I can share online. If you s...

Elizka

•3 days ago

15 Replies

Platelet Rich Plasma Injections with ET?

Has anyone with ET had or is considering getting a Platelet Rich Plasma injection for a bad knee or back problems? I’ve read the Platelet Rich Plasma...

Has anyone with ET had or is considering getting a Platelet Rich Plasma injectio...

George1976

•3 days ago

7 Replies

Stress on ET

Forgive me if this is inappropriate, but my husband and I have lost our house in the Eaton Canyon fire currently being worked on in Los Angeles County, CA USA....

Forgive me if this is inappropriate, but my husband and I have lost our house in...

nightshadow

•3 days ago

22 Replies

income protection insurance?

Hi- I’m self employed and wondering if anyone’s had success getting income protection insurance post-diagnosis? I have ET - very stable, pretty much...

Hi- I’m self employed and wondering if anyone’s had success getting income prote...

Scanny

•4 days ago

1 Reply

Swollen limbs

I had an appointment with the haematologist last week, cutting the hydroxy to eery other day had caused my platelets to rise to 740 from under 400 last month,...

I had an appointment with the haematologist last week, cutting the hydroxy to ee...

lizzziep

•4 days ago

20 Replies

JAK2 and Besremi reduction update!

Hello! I have reduced my dose to 100mg from 150 every two weeks as my HCT began drop below the normal range. So far, the allele burden continues to drop:...

Hello! I have reduced my dose to 100mg from 150 every two weeks as my HCT began...

Elizka

•4 days ago

19 Replies

Bomademstat and bruising

Hi everyone, I've been on bomademstat trial for 2.5 years and everytime my platlets drop suddenly, I get spontaneous bruising. I know when my platlets are...

Hi everyone, I've been on bomademstat trial for 2.5 years and everytime my plat...

CalrAustHooman

•5 days ago

1 Reply

Myelofibrosis

Would like anyone's experience of myelofibrosis please

MariaB27

•5 days ago

8 Replies

im new

i was just diagnosed w ET and am hoping to connect with others

SeaPinesfan

•6 days ago

22 Replies

Bomademstat and a rash?

Hi all I'm new and have a bunch of questions , but I'll start with this one. recently I had my gallbladder out after two nasty episodes of pancreatitis. 4...

Hi all I'm new and have a bunch of questions , but I'll start with this one. rec...

CalrAustHooman

•6 days ago

9 Replies

Does either PV or Hydrea exacerbate Raynaud's?

I'm wondering whether there's any connection between either Polycythemia vera or hydrea with Rayanud's? I'm experiencing quite painful and very persistent...

I'm wondering whether there's any connection between either Polycythemia vera or...

souplover

•6 days ago

25 Replies

High altitudes

Does anyone know if it is dangerous for ppl with PV to take a trip to areas that have a high altitude ? I'm thinking of taking a vacation to an area of Italy...

Does anyone know if it is dangerous for ppl with PV to take a trip to areas that...

ERei

•7 days ago

22 Replies

Functional medical practitioner

Happy Healthy New Year everyone. A question for those of you who see a Functional medical practitioner. What do they help you with and what should I expect...

Happy Healthy New Year everyone. A question for those of you who see a Function...

Linnie5

•7 days ago

2 Replies

Guy’s blood tests moved.

Guys phlebotomy has moved to the Cancer Centre from Tabard Annexe, as I found out the hard way when I went to have a blood taken yesterday. it took a...

Guys phlebotomy has moved to the Cancer Centre from Tabard Annexe, as I found ou...

Gipsy123

•7 days ago

15 Replies

Write a post or ask a question

Posts - MPN Voice | HealthUnlocked

MPN Voice

Back pain and ET

Am I looking too hard?

Jakafi and it's side effects?

Night sweats, curry and beer?!

hu and asprin

Advice please

Hydroxycarbamide and Driving?

statins

Splitting a syringe

Break from Pegasys Interferon

Modbury123

restless leg syndrome, and PV

Momelotinib

functional medical practitioner

Switching from Pegasys to Besremi

Update 8.6 - Multiple doc meetings

New! advances in the role of JAK2 V617F mutation in myeloproliferative neoplasms (MPN)

Platelet Rich Plasma Injections with ET?

Stress on ET

income protection insurance?

Swollen limbs

JAK2 and Besremi reduction update!

Bomademstat and bruising

Myelofibrosis

im new

Bomademstat and a rash?

Does either PV or Hydrea exacerbate Raynaud's?

High altitudes

Functional medical practitioner

Guy’s blood tests moved.

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