Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for November 2023

Update 7.7

It has been a while since my last update. Overall, things are going well. I feel better than ever, other than my knees. Time for another hyaluronic acid...

It has been a while since my last update. Overall, things are going well. I fe...

hunter5582

•11 months ago

32 Replies

Elevated liver function tests

Hey all hope you all are doing good.Recently I've had elevated AST ALT and pain right side of abdomen in liver region. Did any of you with pv go through...

Hey all hope you all are doing good.Recently I've had elevated AST ALT and pain ...

Xuzy

•11 months ago

4 Replies

Visit to Kinesiologist

I visited a Kinesiologist just under a month ago on the advice of my chiropractor. I felt rather uncertain when I saw the Himalayan Salt lamp and was enveloped...

I visited a Kinesiologist just under a month ago on the advice of my chiropracto...

Mwalimu

•11 months ago

6 Replies

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Infections with Ruxolitinib

Just wondering how many of you have had lowered immunity from Rux. On the positive side, my spleen had been greatly enlarged, and Rux took it down very...

Just wondering how many of you have had lowered immunity from Rux. On the positi...

Orangeboykitty

•11 months ago

8 Replies

Am I at risk of shingles

Hello - i'm about to go and spend a weekend with my in laws and they have just announced they have shingles. Am I at risk of this having ET?

Hello - i'm about to go and spend a weekend with my in laws and they have just a...

Fjdjdjdjd

•11 months ago

10 Replies

Hu days update

Had my Heam update after my acne like itchy rash.Confirmed allergic reaction, off Hu for good.She then said they would try me on blood thinner only! Well...

Had my Heam update after my acne like itchy rash.Confirmed allergic reaction, of...

Spanelmad

•11 months ago

16 Replies

fatigue

hi after a few difficult months tests show no progression in my Pv it’s 10 years now can anyone give me advise on fatigue also diets am a really bad picky...

hi after a few difficult months tests show no progression in my Pv it’s 10 ye...

Badger1

•11 months ago

4 Replies

Essential Thrombocythemia and Hemoctomatosis

is there anyone in the group who has both these conditions and would share how they are going Thanks .. I have both and having fortnightly vennesections ..

is there anyone in the group who has both these conditions and would share how t...

Threestreams

•11 months ago

1 Reply

Jak2 and Besremi reduction

My latest test results continue to show a reduction in JAK2 (56% to 24%) since I started Besremi in February 2022. The downward trend was slow at first, but...

My latest test results continue to show a reduction in JAK2 (56% to 24%) since I...

Elizka

•11 months ago

48 Replies

bite and echonocytes at 1+

ET JAK2+ for 18 months. Had sensitive liver reaction to all 3 primary drug treatments, recent one since March is peginterferon at 67 units per week. Liver...

ET JAK2+ for 18 months. Had sensitive liver reaction to all 3 primary drug treat...

Mishie14

•11 months ago

2 Replies

MPN specialist Claire Harrison

Hello everyone I don’t know if anyone can help,I was diagnosed 4years ago with PV Jack 2 & taking hydroxy & Asprin. I’m anaemic & am due a venesection next...

Hello everyone I don’t know if anyone can help,I was diagnosed 4years ago with...

Wilbob

•11 months ago

18 Replies

Covid and platelets

I’ve been on treatment for triple negative ET for almost three years now., taking Hydroxycarbomide (2 one day snd 3 the next) plus aspirin. Over the last year...

I’ve been on treatment for triple negative ET for almost three years now., takin...

EdwinaJ

•11 months ago

14 Replies

how do we know a triple negative diagnosis??

new to ET and all three tests came negative (Jak2, CALR, MPL) and high 80s on CSR! Concerned on what all this means?

new to ET and all three tests came negative (Jak2, CALR, MPL) and high 80s on CS...

EnergizerBunnyz

•11 months ago

4 Replies

Telling family

Hi. I've just been diagnosed with MPN (ET). I need to tell my family and not sure how.Was hoping someone might be able to give me some tips please. Thank you

Hi. I've just been diagnosed with MPN (ET). I need to tell my family and not sur...

Carlalawoo

•11 months ago

32 Replies

update about my unstable blood results

Hi everyone Thank you for your continued support . I have spoken to the hospital today and Dr Garg will be referring me for an urgent venesection . I'm...

Hi everyone Thank you for your continued support . I have spoken to the hospi...

Blonde25

•11 months ago

6 Replies

Nausea and low back pain.

Is it normal to wake up with nausea and get nausea after eating when you have ET?Im asking because my daughter have some symtoms. We live in Norway but she is...

Is it normal to wake up with nausea and get nausea after eating when you have ET...

Gurimalla

•11 months ago

7 Replies

When did you start treatment?

Hello all, thanks for taking the time to read this. I’ve been on watch and wait for 2 years now, without a formal diagnosis (my platelets have between 500-600)...

Hello all, thanks for taking the time to read this. I’ve been on watch and wait ...

inlimbo123

•11 months ago

7 Replies

Losing track of where you are while driving

Have you ever lost track of where you are while driving? I've probably had this occur 3-4 times in the last year in places I have gone to many times. Twice...

Have you ever lost track of where you are while driving? I've probably had thi...

Doxy46

•11 months ago

31 Replies

all of a sudden platelets count is dropping

this is my leg the first time my platelet level dropped. I sent this picture to my GP who called me within 10 minutes to come in to see him. A blood test...

this is my leg the first time my platelet level dropped. I sent this picture to...

jillydabrat

•11 months ago

5 Replies

London MPN Forum

Hello everyone, I was wondering if anyone is going to the MPN Forum in London on Saturday 18th November? I am excited to go again in person and meet others...

Hello everyone, I was wondering if anyone is going to the MPN Forum in London on...

Gaithersburg

•11 months ago

9 Replies

Platelets increase

My mun was diagnosed with thrombocytosis around 3 yrs ago. She has been on Hydresan for these years but during the past two blood tests she had to take her...

My mun was diagnosed with thrombocytosis around 3 yrs ago. She has been on Hydre...

PHGR

•11 months ago

7 Replies

jak2 positive with consistent relative monocytosis

hi MPN community, I am interested if others have also seen a history of both absolute and relative monocytosis with their MPN? my monos count for past 20...

hi MPN community, I am interested if others have also seen a history of both a...

Gooseey

•11 months ago

4 Replies

Bloods unstable

Hi everyone I was diagnosed with P/V in December 2022 Jak 2 positive . Since my diagnosis my bloods have only been stable for a few weeks and at my last...

Hi everyone I was diagnosed with P/V in December 2022 Jak 2 positive . Since ...

Blonde25

•11 months ago

26 Replies

life insurance whilst waiting for official diagnosis

hi all, I have recently tested positive to the jak2 mutation… my consultant thinks it may be ET or myelofibrosis . I am having a bone marrow biopsy done to...

hi all, I have recently tested positive to the jak2 mutation… my consultant thi...

Newbie16

•11 months ago

5 Replies

Is this normal?

After my blood tests last week I was asked to go in on Thursday for a transfusion, as haemoglobin only 69. Felt better for a few days after that but started to...

After my blood tests last week I was asked to go in on Thursday for a transfusio...

lizzziep

•11 months ago

12 Replies

Tummy problems

Hello everyone. I was diagnosed with ET couple of years ago and I take Hydroxy and aspirin. I’ve got a strange tummy ache. Not hurting really more...

Hello everyone. I was diagnosed with ET couple of years ago and I take Hydroxy ...

Cokopops

•11 months ago

11 Replies

Mylofibrosis new guidelines diagnosis and prognostic

Just out: new @BritSocHaem guidelines on the diagnosis and prognostic evaluation of myelofibrosis https://onlinelibrary.wiley.com/doi/10.1111/bjh.19164...

Just out: new @BritSocHaem guidelines on the diagnosis and prognostic evaluatio...

william-Indo

•11 months ago

8 Replies

Can we get free eye tests or dental check-ups?

I'm about to take semi-retirement and as a result my income won't be the same. I just wondered if people diagnosed with MPN's are entitled to any free...

I'm about to take semi-retirement and as a result my income won't be the same. ...

MarkD6701

•11 months ago

6 Replies

Bloods

Some input needed please I am on hydroxycarbamide all was well now my hematocric is dropping and my platelets have risen to 457 in 6 weeks I am now just to...

Some input needed please I am on hydroxycarbamide all was well now my hematocric...

ChillyAsh34

•11 months ago

8 Replies

itching skin after showering

Hello! I have PV and am recently experiencing awful itching skin only after showering. I’ve reduced my showers to every second day and started taking an...

Hello! I have PV and am recently experiencing awful itching skin only after sho...

Deevie1

•11 months ago

36 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2023

Update 7.7

Elevated liver function tests

Visit to Kinesiologist

Infections with Ruxolitinib

Am I at risk of shingles

Hu days update

fatigue

Essential Thrombocythemia and Hemoctomatosis

Jak2 and Besremi reduction

bite and echonocytes at 1+

MPN specialist Claire Harrison

Covid and platelets

how do we know a triple negative diagnosis??

Telling family

update about my unstable blood results

Nausea and low back pain.

When did you start treatment?

Losing track of where you are while driving

all of a sudden platelets count is dropping

London MPN Forum

Platelets increase

jak2 positive with consistent relative monocytosis

Bloods unstable

life insurance whilst waiting for official diagnosis

Is this normal?

Tummy problems

Mylofibrosis new guidelines diagnosis and prognostic

Can we get free eye tests or dental check-ups?

Bloods

itching skin after showering

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