Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for May 2019

Feeling rough - high BP?

Hi Sorry for the long post, I have MF, diagnosed January 2018 currently taking Pegasys Interferon (45mcg per week) and aspirin, for a while before Easter I...

Hi Sorry for the long post, I have MF, diagnosed January 2018 currently taking P...

Not2bad

•5 years ago

13 Replies

Dry sticky eyes.

Hi all, I just wondered if anyone taking hydroxy has trouble with sticky and watery eyes. When I first started on hydroxy 7 years ago I took my meds at night...

Hi all, I just wondered if anyone taking hydroxy has trouble with sticky and wat...

Hydrox

•5 years ago

6 Replies

Hairfall with HU

Hi. Does anyone experienced hairfall with HU?

DamnYouEt

•5 years ago

10 Replies

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Mouth Ulcers

Morning all, I have et jak2 + diagnosed 2011 age 57, I’m on aspirin, and anagrelide. I used to get regular reoccurring mouth ulcers but after cutting out...

Morning all, I have et jak2 + diagnosed 2011 age 57, I’m on aspirin, and anagr...

SuekJ

•5 years ago

19 Replies

Myelofibrosis - changing dose of rux and epo helps the fatigue

Hi I thought it was time I wrote an update post, as well as replying to others. The good news is that I’d discovered that changing my dose of ruxoltinib (...

Hi I thought it was time I wrote an update post, as well as replying to others...

Rachelthepotter

•5 years ago

21 Replies

Solutions to itchiness?

Hi there, Wondered if any of you out there have found any solutions to the dreadful itchies? They are the most prominent symptom for me. Diagnosed 6 years ago...

Hi there, Wondered if any of you out there have found any solutions to the dread...

Boss1

•5 years ago

20 Replies

Sore stiff joints

I was diagnosed ET Calr last year with platelets above 1200. Now taking Anagralide and platelets normal and under control. Recently I have developed really...

I was diagnosed ET Calr last year with platelets above 1200. Now taking Anagrali...

Arty16

•5 years ago

4 Replies

Surgery and Hydroxy

Hi my MPN family, I have not been to well lately, feeling full on the smallest amount of food, my stomach being bloated and when I did eat it was like someone...

Hi my MPN family, I have not been to well lately, feeling full on the smallest ...

jillydabrat

•5 years ago

32 Replies

Falling red blood count.

This is trinigirl. I am having a problem with my red blood count. With every blood work, it is falling a few points. I was disappointed that my haem told me...

This is trinigirl. I am having a problem with my red blood count. With every blo...

Trinigirl

•5 years ago

12 Replies

I’m really scared... high wbc count and elevated platelet count...

Hi! I recently went the the doctor for a normal checkup... My blood work was 15000 wbc .. and 403 platelet count... I’ve been reading things on the internet...

Hi! I recently went the the doctor for a normal checkup... My blood work was 150...

Jbivens77

•5 years ago

17 Replies

Doxycycline and Pegasys

Hi wonderfully informed people of HealthUnlocked, I was prescribed Doxycycline by my GP earlier for a persistent sinus infection. I’ve taken the first dose...

Hi wonderfully informed people of HealthUnlocked, I was prescribed Doxycycline...

Charlieapple2018

•5 years ago

12 Replies

Aspirin

Does it matter if you forget to take your aspirin for a couple of days?

Andra13

•5 years ago

6 Replies

Headache

Hi all.... I would like to hear from anyone that has any advice on headaches.... I was diagnosed in April this year with E/T jak2 + at the moment I am only...

Hi all.... I would like to hear from anyone that has any advice on headaches......

Dazakella2010

•5 years ago

17 Replies

Hu or Pegasus

I’m on Hu but thinking of switching to Pegasus what’s everyone’s in take on Pegasus I read stomache pain nausea and muscoskelatal pain I get all thisevery day...

I’m on Hu but thinking of switching to Pegasus what’s everyone’s in take on Pega...

Hahag

•5 years ago

4 Replies

update 2 New Beginnings

well we did it Dee my partner (3yrs time has flown by.) we got married in Gibraltar on 25th April. now in Majorca on honeymoon. life throws you a curve ball or...

well we did it Dee my partner (3yrs time has flown by.) we got married in Gibral...

Hughesf

•5 years ago

11 Replies

JAK2 Testing

Hello, I am curious about other people’s path to getting a PV diagnosis. Is JAK2 is the definitive test for PV? I have been referred to Haemotologist and...

Hello, I am curious about other people’s path to getting a PV diagnosis. Is JAK...

Jennifermcd

•5 years ago

3 Replies

Being a doctor with et

Is there any doctor with ET? Kindly let me know how things are going for you.

DamnYouEt

•5 years ago

8 Replies

Charity Run

My son and I did the Gatwick 5k run this morning. His chosen charity was MPN Voice as I was diagnosed with ET two years ago. He managed to raise nearly 200%...

My son and I did the Gatwick 5k run this morning. His chosen charity was MPN Voi...

beckyluck

•5 years ago

16 Replies

Ketogenic diet and PV

Has anyone here been told ketogenic diet could be a good option for Pv, Et or MF? A friend with cancer went to MacMillan Cancer which referred him to Maggies...

Has anyone here been told ketogenic diet could be a good option for Pv, Et or MF...

hybiscus

•5 years ago

23 Replies

Diet + Exercise for PV

I have not been diagnosed with PV yet but it is suspected. I’m taking the JAK2 test now. Just wondering does diet and exercise help at all with this disease?...

I have not been diagnosed with PV yet but it is suspected. I’m taking the JAK2 t...

Jennifermcd

•5 years ago

18 Replies

Feeling a bit sorry for myself 🙁

I was diagnosed with ET triple negative in Dec last year, follow up bloods to confirm in Feb. My consultant wrote to the gp to increase my omeprazole (previous...

I was diagnosed with ET triple negative in Dec last year, follow up bloods to co...

Dark-Angel

•5 years ago

14 Replies

Mpn and cancer policy coverage

I have been diagnosed with Mpn I have a cancer policy at work. Could I make a claim or would it be covered?

I have been diagnosed with Mpn I have a cancer policy at work. Could I make a cl...

Krailey

•5 years ago

11 Replies

Hello - how to get message across to drs.

Hi. I’m Jacquie. I was diagnosed with ET in October, Myelofibrosis in January. Had a stroke last July which led to the diagnosis. Hard to know which condition...

Hi. I’m Jacquie. I was diagnosed with ET in October, Myelofibrosis in January. H...

Jlah

•5 years ago

14 Replies

Recently diagnosed with PV

Hi All, I was diagnosed with PV about 5 months ago. My haemocratit level was 65 and my hemoglobin was 23.6. I am 43 years old. My hematologist initially...

Hi All, I was diagnosed with PV about 5 months ago. My haemocratit level was 65...

Brian27

•5 years ago

3 Replies

QUESTION

GOOD MORNING ALL......I HAVE ET JAK2 .... PLATELETS ARE STILL PRETTY LOW 501 SO WE ARE NOT DOING MEDS YET .... MY QUESTION IS I WOULD LIKE TO USE CBD CREAM ON...

GOOD MORNING ALL......I HAVE ET JAK2 .... PLATELETS ARE STILL PRETTY LOW 501 SO ...

111xxx888kam

•5 years ago

2 Replies

Is my wbc to low at 3.9

Been on hydrox for two years now and my plates are in normal range now at 385 . My doctor done a recent blood test because I feel even more tired than normal...

Been on hydrox for two years now and my plates are in normal range now at 385 . ...

Jackie49

•5 years ago

5 Replies

Puzzling Labs last 4 years

Hi there. I'm new here so bear with my questions. I had an aunt on my mother's side who had PV. She is no longer with us. Since early 2016 my annual labs have...

Hi there. I'm new here so bear with my questions. I had an aunt on my mother's s...

Shellbi

•5 years ago

10 Replies

Balance

Thanks to everybody who replied. I was diagnosed with ET this February,not sure what I’m dealing with. Seeing the consultant next Thursday . Writing down some...

Thanks to everybody who replied. I was diagnosed with ET this February,not sure ...

Andra13

•5 years ago

Be the first to reply

Just had bone marrow biopsy

Had it, knocked me out with fentanyl, felt nothing, no pain 4 hours in. They sent me link so I could look at all my tests, etc. Didn't work. Go figure. I...

Had it, knocked me out with fentanyl, felt nothing, no pain 4 hours in. They se...

MPN123

•5 years ago

2 Replies

What to do about mouth ulcers?

Im now starting to get mouth ulcers, tender palate and gums. Can anyone give offer some advice on how to treat it? Regards BZ

Im now starting to get mouth ulcers, tender palate and gums. Can anyone give of...

BloodZero

•5 years ago

20 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2019

Feeling rough - high BP?

Dry sticky eyes.

Hairfall with HU

Mouth Ulcers

Myelofibrosis - changing dose of rux and epo helps the fatigue

Solutions to itchiness?

Sore stiff joints

Surgery and Hydroxy

Falling red blood count.

I’m really scared... high wbc count and elevated platelet count...

Doxycycline and Pegasys

Aspirin

Headache

Hu or Pegasus

update 2 New Beginnings

JAK2 Testing

Being a doctor with et

Charity Run

Ketogenic diet and PV

Diet + Exercise for PV

Feeling a bit sorry for myself 🙁

Mpn and cancer policy coverage

Hello - how to get message across to drs.

Recently diagnosed with PV

QUESTION

Is my wbc to low at 3.9

Puzzling Labs last 4 years

Balance

Just had bone marrow biopsy

What to do about mouth ulcers?

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