Posts - MPN Voice | HealthUnlocked

MPN Voice

11,266 members•15,747 posts

All posts for October 2022

ET Jak2 Tet2

Hello, Recently diagnosed and Specialist wants to follow for a few years till I hit 60 and then begin Besremi or Interferon (Ropeg). Hunter5582 please weigh...

Hello, Recently diagnosed and Specialist wants to follow for a few years till I ...

DiveGoddess

•2 years ago

8 Replies

just found this journal related to the cause of PV

Interesting and useful to know cause of polycythemia! SGLT2 inhibitor induced erythrocytosis JAK2 wild-type erythrocytosis associated with sodium-glucose...

Interesting and useful to know cause of polycythemia! SGLT2 inhibitor induced...

william-Indo

•2 years ago

2 Replies

v low BP

Hi. Any reasons why my BP should drop really low 103/70? ? HT 76, O2 Sats 97.

Hi. Any reasons why my BP should drop really low 103/70? ? HT 76, O2 Sats 97. ...

Rachelthepotter

•2 years ago

5 Replies

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new to interferon Hunter can you help ?

When switching to interferon injections, should you still be on 3 a day hydroxy at same time ?

When switching to interferon injections, should you still be on 3 a day hydroxy...

Hidden

•2 years ago

4 Replies

Ja k2 negative

jak2 negative

Gnt3

•2 years ago

1 Reply

Travel insurance good news

Travel insurance arranged at last. After cancelling my trip to Canada due to insurance coming in at between £1000 and over £3000 due to JAK2POSITIVE ET, I...

Travel insurance arranged at last. After cancelling my trip to Canada due to in...

KentBee

•2 years ago

4 Replies

Recently JAK2 positive what’s next?

Hi everyone, I’ve recently been found to be JAK2 positive and have a referral to a specialist in December. I’m 38 and my GP said it’s outside of her field of...

Hi everyone, I’ve recently been found to be JAK2 positive and have a referral to...

Superchur

•2 years ago

20 Replies

Ruxolitinib and urinary tract infections

I've been on Jakafi for a couple of months and am starting to see indications of a possible bladder infection. I understand that UTIs are a reported side...

I've been on Jakafi for a couple of months and am starting to see indications of...

sbs_patient

•2 years ago

7 Replies

Can you keep focus in large group settings?

Hi all. I have ET Jak2 positive. I take hydroxycarbamide, blood thinners and statins. I really struggle to focus in a large group setting e.g. a party or...

Hi all. I have ET Jak2 positive. I take hydroxycarbamide, blood thinners and st...

Conneryfan

•2 years ago

10 Replies

Covid Shot, benefit of side effects

I got my 4th shot two days ago. I had been waiting for the bivalent (Omicron Ba.5 + Wuhan-Hu-1) since only Omicron is out there now. I also waited for the...

I got my 4th shot two days ago. I had been waiting for the bivalent (Omicron Ba...

EPguy

•2 years ago

6 Replies

covid and ‘the itch’

I posted a few months ago that my itch had returned. I didn’t think at the time to say I had just recovered from covid - so - two weeks after testing...

I posted a few months ago that my itch had returned. I didn’t think at the tim...

S031251

•2 years ago

11 Replies

Great article for “the itch”.

Hi Yes I have the itch but only sometimes. Lately it has become almost unbearable. I have been on pegasys for 6 months. Read this article on Mast Cell...

Hi Yes I have the itch but only sometimes. Lately it has become almost unbeara...

MAP44

•2 years ago

6 Replies

Is anyone with ET on disability?

My Dr said that in the next 5 years he is going to suggest that I go on disability. He has mentioned this before however I just can't imagine not working. I...

My Dr said that in the next 5 years he is going to suggest that I go on disabili...

Zeppelin11

•2 years ago

5 Replies

Hours at Work changing 😞

Hi i have ET and taking Hydrochloride.I have been diagnosed since January 2022. I have excellent work record until now but do struggle with some tasks 😔 I...

Hi i have ET and taking Hydrochloride.I have been diagnosed since January 2022....

Jones51

•2 years ago

17 Replies

Finally got Covid

So it’s 3:00 in the morning here. I can’t sleep because my chest is so congested. I’ve had fever 4 nights in a row. I’m also taking a lot of medication which...

So it’s 3:00 in the morning here. I can’t sleep because my chest is so congeste...

Cja1956

•2 years ago

33 Replies

Is weight loss even possible?

Greetings all, Coming up to 2 yrs on hydroxycarbamide and JAK 2 + and it seems like I'm hitting a brick wall with even maintaining my pre-medication weight....

Greetings all, Coming up to 2 yrs on hydroxycarbamide and JAK 2 + and it seems ...

Hidden

•2 years ago

25 Replies

Post Besremi test

WHEN do you hematologist recommended test your genes after taking Besremi? hat kind of test a NGS or whole test also called mieloide panel or only we must...

WHEN do you hematologist recommended test your genes after taking Besremi? ha...

SoledadBarcelona

•2 years ago

11 Replies

A little upset

Well I have been on peg and Anagralide for 4 weeks. After 2 injections of 45mg I went rfom 1060 platelets to 790 great I thought. Last week platelets up...

Well I have been on peg and Anagralide for 4 weeks. After 2 injections of 45m...

JeniMac

•2 years ago

7 Replies

Started Peginterferon!

Hi all I’m 72 old very fit female diagnosed with ET JAK2 + 2 years ago, platelets 650. Started on Hydrea but had too many side effects although on a low...

Hi all I’m 72 old very fit female diagnosed with ET JAK2 + 2 years ago, platel...

Fairbank

•2 years ago

4 Replies

JAK2 Allele Burden On Pegasys

Hi all - haven’t posted in a while, but looking to see if anyone has had an experience like mine. I was diagnosed Oct 2020 with a hct over 70, and went...

Hi all - haven’t posted in a while, but looking to see if anyone has had an expe...

Snook37

•2 years ago

39 Replies

inflamation

nice easy to read book to inspire eat right for inflammation type . By Maggie berghoff I picked it up when browsing in library

nice easy to read book to inspire eat right for inflammation type . By Magg...

Mostew

•2 years ago

9 Replies

Raise the Roof for MPN Voice at an afternoon of musical delight and poetry

Taking place on Sunday 6th November 2022, 4 – 6 pm (GMT) in All Saints Church, All Saints Road, Newmarket, Suffolk, CB8 8ES (doors open at 3.30 pm)...

Taking place on Sunday 6th November 2022, 4 – 6 pm (GMT) in All Saints Church, A...

Mazcd

Partner•2 years ago

1 Reply

Anagrelid to Interferon and Hashimoto.

I’m seriously thinking of changing from Anagrelid to interferon. I’ve always had heart palpitations from Anagrelide. All doctors to date said no...

I’m seriously thinking of changing from Anagrelid to interferon. I’ve alwa...

Anag

•2 years ago

23 Replies

Living with ET+CALR and new to the group…Hello Everyone

Currently on a high dose of Hydro (3 pills a day) and trying to keep consistent numbers. My platelets spiked up to the millions last month because we have been...

Currently on a high dose of Hydro (3 pills a day) and trying to keep consistent ...

Zeppelin11

•2 years ago

34 Replies

Cutting up Jakafi pills?

I was wondering if anyone knows whether these pills can be cut when adjusting dosage. I've been told to reduce my initial 10 mg twice a day by taking the pills...

I was wondering if anyone knows whether these pills can be cut when adjusting do...

sbs_patient

•2 years ago

24 Replies

Slight hand tremor

hi all, my partner (34f) is after having 4 venesections in the last 7 weeks all in her left arm. Her last venesection was last Wednesday (19/10) she has since...

hi all, my partner (34f) is after having 4 venesections in the last 7 weeks all ...

Ppjd

•2 years ago

3 Replies

Peg Interferon or HU

Hi everyone! Does anyone know if Interferon or HU is safer in the long run? I've done some readings and it seems like HU is more toxic and can lead to some...

Hi everyone! Does anyone know if Interferon or HU is safer in the long run? I've...

Timtams

•2 years ago

7 Replies

dentist

hi lovely people I feel fobed of so today finally I had a dentist appointment I have waited ages for it only to be told I have to get a letter of my doctor to...

hi lovely people I feel fobed of so today finally I had a dentist appointment I ...

Staroftheday

•2 years ago

16 Replies

should I accept antivirals

tested positive for covid a bit breathless and persistent cough should I take antiviralsbofferred

tested positive for covid a bit breathless and persistent cough should I take ...

QA1982

•2 years ago

12 Replies

Unbearable itching! Any ideas to calm it down?

Hello all, I started with ET but now have PV and have been on Peg for about 6 weeks with phlebotomies occasionally. My Hematocrit has gone down but my...

Hello all, I started with ET but now have PV and have been on Peg for about 6 ...

Airslie

•2 years ago

34 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2022

ET Jak2 Tet2

just found this journal related to the cause of PV

v low BP

new to interferon Hunter can you help ?

Ja k2 negative

Travel insurance good news

Recently JAK2 positive what’s next?

Ruxolitinib and urinary tract infections

Can you keep focus in large group settings?

Covid Shot, benefit of side effects

covid and ‘the itch’

Great article for “the itch”.

Is anyone with ET on disability?

Hours at Work changing 😞

Finally got Covid

Is weight loss even possible?

Post Besremi test

A little upset

Started Peginterferon!

JAK2 Allele Burden On Pegasys

inflamation

Raise the Roof for MPN Voice at an afternoon of musical delight and poetry

Anagrelid to Interferon and Hashimoto.

Living with ET+CALR and new to the group…Hello Everyone

Cutting up Jakafi pills?

Slight hand tremor

Peg Interferon or HU

dentist

should I accept antivirals

Unbearable itching! Any ideas to calm it down?

Search posts

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What age were you when your MPN was diagnosed?

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Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2022

ET Jak2 Tet2

﻿just found this journal related to the cause of PV

v low BP

﻿new to interferon Hunter can you help ?

﻿Ja k2 negative

Travel insurance good news

Recently JAK2 positive what’s next?

Ruxolitinib and urinary tract infections

﻿Can you keep focus in large group settings?

Covid Shot, benefit of side effects

covid and ‘the itch’

Great article for “the itch”.

Is anyone with ET on disability?

Hours at Work changing 😞

Finally got Covid

Is weight loss even possible?

﻿Post Besremi test

﻿A little upset

Started Peginterferon!

JAK2 Allele Burden On Pegasys

﻿inflamation

Raise the Roof for MPN Voice at an afternoon of musical delight and poetry

Anagrelid to Interferon and Hashimoto.

Living with ET+CALR and new to the group…Hello Everyone

Cutting up Jakafi pills?

Slight hand tremor

Peg Interferon or HU

dentist

should I accept antivirals

Unbearable itching! Any ideas to calm it down?

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

just found this journal related to the cause of PV

new to interferon Hunter can you help ?

Ja k2 negative

Can you keep focus in large group settings?

Post Besremi test

A little upset

inflamation