Posts - MPN Voice | HealthUnlocked

MPN Voice

10,431 members • 14,374 posts

All posts for July 2021

Hydroxycarbamide

I’ve been taking Hydroxycarbamide at 500x2 5 days snd 500 x1 2 days for a year. My count was 1200 and it went down quickly and I was reduced to less but then...

I’ve been taking Hydroxycarbamide at 500x2 5 days snd 500 x1 2 days for a year....

Mungestar

•3 years ago

7 Replies

Pfizer vaccine effective in patients with MPNs

This may not be new news, but it is good news that I wanted to share! The link will take you to a Covid-19 press release by Pfizer, based on research by our...

This may not be new news, but it is good news that I wanted to share! The link w...

Ovingite

•3 years ago

48 Replies

ET RINGING IN THE EAR

ET RINGING IN THE EAR ?? does anyone experience

shiela23

•3 years ago

40 Replies

Want to take advantage of all our features? Just log in!

Hi, I’m new here, I was diagnosed with ET 6 weeks ago.

My platelet count was 540 and after 6 weeks of 500mg daily of Hydroxyurea my count is now 304. I won’t be seeing the doctor for another 7 weeks and I’m...

My platelet count was 540 and after 6 weeks of 500mg daily of Hydroxyurea my cou...

ScrabbleM

•3 years ago

19 Replies

Lactase Dehydogenase level high!

I started seeing an MPN specialist on July 1. He tested for lactase dehydrogenase and in was 242. I just had it repeated and it is now 327. My platelets rose...

I started seeing an MPN specialist on July 1. He tested for lactase dehydrogenas...

Wewo01

•3 years ago

28 Replies

MPN Voice social media update – we have some new pages for you to follow!

The MPN Voice Fundraising Team is pleased to announce the launch of our brand new fundraising Facebook group and Instagram page focusing on Fundraising, a...

The MPN Voice Fundraising Team is pleased to announce the launch of our brand ne...

Mazcd

Partner•3 years ago

7 Replies

What’s going on?

Yesterday I felt a bit down which as anyone who knows me knows that is unusual for me. I couldn’t put a finger on why I felt like that - possibly because I’m...

Yesterday I felt a bit down which as anyone who knows me knows that is unusual f...

beetle

•3 years ago

23 Replies

MPN Clinic

Hi does anyone have any idea how they approach/contact the following: MPNclinic: MPNforum sponsors the MPNclinic – an on-line resource for patients to have...

Hi does anyone have any idea how they approach/contact the following: MPNclinic:...

Oscarsboy

•3 years ago

4 Replies

Taken off Hydrea effects

Hi all. I was hoping there might be someone out there that might be in the same position. I was on Hydrea for over two years. In the last six months I was also...

Hi all. I was hoping there might be someone out there that might be in the same ...

vegas22

•3 years ago

8 Replies

Platelet count blood test

Can anybody advise when the best time is to have blood test for low platelet count thank you

Can anybody advise when the best time is to have blood test for low platelet cou...

Mardihel

•3 years ago

5 Replies

Confused

Hi all, I’m a little confused I’ve just had my telephone consultation and my consultant has informed me that because my blood levels are now in range (which is...

Hi all, I’m a little confused I’ve just had my telephone consultation and my con...

Jules153

•3 years ago

38 Replies

Sorry they didn’t publish

Sorry for telling you the wrong date for the Cancer52 story in the Mail on Sunday. Apparently the story was bumped because of Bumbling Boris isolating in his...

Sorry for telling you the wrong date for the Cancer52 story in the Mail on Sunda...

jillydabrat

•3 years ago

9 Replies

PV side effect not heard of by Haematologist

Has anyone with PV or other MPN experienced sensations in calves and feet. The sensations are in the calves like mini cramps and in feet of a ‘tightening’...

Has anyone with PV or other MPN experienced sensations in calves and feet. The s...

Edinburgh1953

•3 years ago

15 Replies

Have ET Calr positive and Jak2 negative. RDW-CV going up

Hi Everyone. ET CALR positive, Jak2 negative. Just got blood test results again. My Platelet count dropped from 656 to 561 which is good news. Steady drops....

Hi Everyone. ET CALR positive, Jak2 negative. Just got blood test results again....

blueseas45

•3 years ago

3 Replies

ET or PV

Hi, I was originally diagnosed with ET 18 months ago by my haematologist, I later requested a second opinion from an MPN specialist but realised later I didn't...

Hi, I was originally diagnosed with ET 18 months ago by my haematologist, I late...

JP1952

•3 years ago

22 Replies

Update on peg injections

Sorry for such a delay in posting my up date. I’ve been feeling so well I’ve been so busy ‘living a normal life’ I’ve just hadn’t had the time. Along with 3...

Sorry for such a delay in posting my up date. I’ve been feeling so well I’ve bee...

Wyebird

•3 years ago

14 Replies

Pots

Hi I’m just wondering if anyone on here has a blood pressure issue and low sodium in blood due to HU my bp drops really low when standing up for more than 10...

Hi I’m just wondering if anyone on here has a blood pressure issue and low sodiu...

Holly2021

•3 years ago

11 Replies

Starting Hydroxycarbamide - ET Jak2

Hiya everyone, hope you are all well and staying safe. I have just started Hydroxycarbamide and wondered if anyone else was at the start of their...

Hiya everyone, hope you are all well and staying safe. I have just started Hydro...

Cassandra61

•3 years ago

9 Replies

Pegasys injections now hurt

Hi all, I have ET and have been injecting Pegasys weekly since around March this year. I always choose my abdomen as my thighs are a bit solid and it never...

Hi all, I have ET and have been injecting Pegasys weekly since around March this...

FashionLover

•3 years ago

26 Replies

ET PROBLEM

who has ET experience lots of pinching pain in the body sharp pins also???

shiela23

•3 years ago

6 Replies

Just diagnosed MF

Hello everyone, thank you for accepting me to this group. So back in Dec I was diagnosed with ET JAK2+ I had a BMB and yesterday I went for the results. I was...

Hello everyone, thank you for accepting me to this group. So back in Dec I was d...

Mumfer

•3 years ago

25 Replies

Hello

Hi I am new to this site and finding it very difficult to get my face to face appointment with the Consultant at the hospital, who has phoned me and told me I...

Hi I am new to this site and finding it very difficult to get my face to face ap...

Oscarsboy

•3 years ago

50 Replies

ET PAINS

does any body feel very pain in the body and severe headache squeeze pain vertigo? 6 months diagnosed still taking pain killers?

does any body feel very pain in the body and severe headache squeeze pain vertig...

shiela23

•3 years ago

9 Replies

Besremi versus Pegasys

Is Besremi better than Pegasys. I can't find a good comparison study between the two. Study shows that both can reduce jak2 allele burden, but does one work...

Is Besremi better than Pegasys. I can't find a good comparison study between th...

Flynn2107

•3 years ago

13 Replies

Myelofibrosis Treatment Option

Just saw this Webinar announced. Thought it might be of interest to some. Note that it is sponsored by a pharmaceutical company, so will likely focus on...

Just saw this Webinar announced. Thought it might be of interest to some. Not...

hunter5582

•3 years ago

3 Replies

Pelabresib May Represent Optimal Partner for JAK Inhibition in Myelofibrosis

The benefits yielded with the BET inhibitor pelabresib (formerly CPI-0610) in patients with myelofibrosis are multifold, and the agent’s potential to improve...

The benefits yielded with the BET inhibitor pelabresib (formerly CPI-0610) in pa...

Manouche

•3 years ago

1 Reply

How long ?

Don't know where to start! I have been diagnosed with secondary MF I am tired, aching joints, sweating, and sore heads I am kinship carer for my beautiful...

Don't know where to start! I have been diagnosed with secondary MF I am tired, ...

indy22

•3 years ago

17 Replies

Jab or not ?

Have etjk2 still on daily aspirin only ,but am in discussions about starting treatment. How many of you haven't had THE JAB ?

Have etjk2 still on daily aspirin only ,but am in discussions about starting tre...

Rocket2017

•3 years ago

23 Replies

Menopause and ET

I’ve been living with ET for about 10 years treated very well with pegasys. I am pretty much convinced I’m in the perimenopause and am wanting to find out...

I’ve been living with ET for about 10 years treated very well with pegasys. I am...

teddy21

•3 years ago

18 Replies

Pegasus interferon injection

I have just done my 5th injection and it’s the preparing that causes me a problem I can snap the needle out without a problem but having difficulties after...

I have just done my 5th injection and it’s the preparing that causes me a proble...

Hughley

•3 years ago

20 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2021

Hydroxycarbamide

Pfizer vaccine effective in patients with MPNs

ET RINGING IN THE EAR

Hi, I’m new here, I was diagnosed with ET 6 weeks ago.

Lactase Dehydogenase level high!

MPN Voice social media update – we have some new pages for you to follow!

What’s going on?

MPN Clinic

Taken off Hydrea effects

Platelet count blood test

Confused

Sorry they didn’t publish

PV side effect not heard of by Haematologist

Have ET Calr positive and Jak2 negative. RDW-CV going up

ET or PV

Update on peg injections

Pots

Starting Hydroxycarbamide - ET Jak2

Pegasys injections now hurt

ET PROBLEM

Just diagnosed MF

Hello

ET PAINS

Besremi versus Pegasys

Myelofibrosis Treatment Option

Pelabresib May Represent Optimal Partner for JAK Inhibition in Myelofibrosis

How long ?

Jab or not ?

Menopause and ET

Pegasus interferon injection

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