Posts - MPN Voice | HealthUnlocked

MPN Voice

11,256 members•15,731 posts

All posts for June 2021

News Flash

Just had a news flash on the ipad that boosters for Covid will start with people who are immune suppressed in September. I can only hope this works and I am...

Just had a news flash on the ipad that boosters for Covid will start with people...

jillydabrat

•4 years ago

25 Replies

Info on ET to educate Physicians/GPs!

Hi friends, I came across this article written as a guide to ET for physicians....

Hi friends, I came across this article written as a guide to ET for physicians.....

IrishSarah

•4 years ago

10 Replies

Jak 2 test

hello, i did a jak2 v617f test but i don't know how long i have to wait... Can anyone tell me? Thank you

hello, i did a jak2 v617f test but i don't know how long i have to wait... Can a...

Graedible

•4 years ago

10 Replies

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Pegasys update

Hi all, So the blood results are in and I’ve had my consultation with my specialist nurse. My platelets after one week have dropped from 450 to 253!! I’ve...

Hi all, So the blood results are in and I’ve had my consultation with my special...

Wyebird

•4 years ago

9 Replies

Family of anti vaccines

I have ET and I’m 67. After a long time shielding, hubby and I are just starting to meet up with family and friends safely. All the people we meet have had...

I have ET and I’m 67. After a long time shielding, hubby and I are just startin...

Lorrmac

•4 years ago

18 Replies

Daisy-May

Just freaked out on Google saying 5 years life expectancy for Myeloproliferative disorder.. Wondering if anyone has any positive words...

Just freaked out on Google saying 5 years life expectancy for Myeloproliferative...

Daisy-May

•4 years ago

33 Replies

PV Symptom Chart

Hello All, I am a recent addition to this site, having been diagnosed earlier this year. I live in Tasmania Australia, and there are few on our island with...

Hello All, I am a recent addition to this site, having been diagnosed earlier th...

Magnolia999

•4 years ago

6 Replies

Storage of Pegasus interferon

I started on Pegasus interferon last week and I am very concerned regarding the storage of the syringe in my fridge not being at the correct temperature 2-8...

I started on Pegasus interferon last week and I am very concerned regarding the ...

Hughley

•4 years ago

26 Replies

Well, I did it

Just finished the Cancer52 launch. Many charities were invited who deal with lesser known cancers so the questions in Chat were flying in fast and furious. I...

Just finished the Cancer52 launch. Many charities were invited who deal with les...

jillydabrat

•4 years ago

37 Replies

Platelet count 492 ESR & CRP elevated

.....Hello new here! Does anybody have elevated platelets along with elevated crp and esr? Usually my platelets are 420 ( for around the past 4 1/2 years) my...

.....Hello new here! Does anybody have elevated platelets along with elevated cr...

Hidden

•4 years ago

9 Replies

Can you C Us Campaign

Hi everyone, sorry but just found out that the parliamentary launch is not going to be televised. I don’t know if I will be able to record it via zoom but I...

Hi everyone, sorry but just found out that the parliamentary launch is not going...

jillydabrat

•4 years ago

13 Replies

UPDATE: WARWICK's ASCT Journey...

Mon Jun 28, 2021 9:18 pm Hello MPNers Since my last post I left hospital but after 10 days 5 days at my parents house till my kids got over sniffles and 5 days...

Mon Jun 28, 2021 9:18 pm Hello MPNers Since my last post I left hospital but aft...

socrates_8

•4 years ago

28 Replies

PV, asthma and high B12

Crotchety here. First let me say how useful all your posts have been. I have PV, taking hydroxicarbamide and aspirin. I have asthma but am investigating...

Crotchety here. First let me say how useful all your posts have been. I have PV,...

Crotchety

•4 years ago

2 Replies

Hydroxy, shoulder and back pain

Awful pain in my left shoulder and consistent lower back pain lm sure its linked to Hydroxy that lve been taking for around eight months.

Awful pain in my left shoulder and consistent lower back pain lm sure its linked...

Hidden

•4 years ago

14 Replies

CRISPR injected into the blood treats a genetic disease for first time

« Jennifer Doudna of the University of California, Berkeley, who shared a Nobel Prize last year for discovering CRISPR and co-founded Intellia, sees even...

« Jennifer Doudna of the University of California, Berkeley, who shared a Nobel ...

Manouche

•4 years ago

6 Replies

B12

Does anyone have any information on B12 levels with PV please?

Ellipops

•4 years ago

3 Replies

PV and fatigue

Hello all, I was diagnosed with PV nearly three years ago. It was the all too familiar blood test for an unrelated matter which led to the discovery and...

Hello all, I was diagnosed with PV nearly three years ago. It was the all too fa...

Eric73

•4 years ago

8 Replies

Any tips for dealing with fatigue?

Thing is I dont really know if this is long covid, perimenopause or ET but I am knackered. I woke up feeling like getting on top of the housework which has...

Thing is I dont really know if this is long covid, perimenopause or ET but I am ...

queeniethequeen

•4 years ago

29 Replies

Progressively Higher Platelets, can this be the cause of my symptoms?

Hi all! Please bear with me as this is my first post. History: 29F Caucasian, medication controlled asthma, allergies, and hypothyroid. I have an appt with a...

Hi all! Please bear with me as this is my first post. History: 29F Caucasian, m...

Munderdown7264

•4 years ago

6 Replies

Jakavi

I started Jakavi treatment some months ago as I was progressing from PV to myelofibrosis. I had immediate relief from itching but it seems to have returned....

I started Jakavi treatment some months ago as I was progressing from PV to myelo...

lucieboo

•4 years ago

10 Replies

Functional Consequences of Mutations in Myeloproliferative Neoplasms

« Of great interest, a set of epigenetic mutations can co-exist with the phenotypic driver mutations in 35%–40% of MPNs. These epigenetic mutations, such as...

« Of great interest, a set of epigenetic mutations can co-exist with the phenot...

Manouche

•4 years ago

3 Replies

My wife has been discharged from hospital

I must firstly say a big thank you to all that have replied to my last posts. My meeting with the consultants was unimpressive as they were basically trying to...

I must firstly say a big thank you to all that have replied to my last posts. My...

jointpain

•4 years ago

23 Replies

Getting frustrated with the delay approval of ropeg In the US

Sometimes I can't help to think if enough is being done for MPN sufferers. According to multiple research ropeg has shown superiority over hydroxyurea...

Sometimes I can't help to think if enough is being done for MPN sufferers. A...

markgenious1981

•4 years ago

19 Replies

Lightheaded, rheumatology appointment

Hi from last week or so ive been getting quite lightheaded alot in days only latest a few seconds some days I get worse than other days few headaches aswell...

Hi from last week or so ive been getting quite lightheaded alot in days only lat...

Jody00

•4 years ago

5 Replies

Introduction of myself, PMF, from China

Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At that time, the splenomegaly was high, but it was not very high, and it was not...

Hi, I'm Qi, from China, I'm 34 years old this year. I confirmed PMF in 2017. At ...

merlisa

•4 years ago

21 Replies

Parliamentary launch of “Do You C Me?”

Hi my MPN family A while ago I told you that I was doing a video with Cancer52 who are a charity that tries to raise awareness of lesser known cancers. 5...

Hi my MPN family A while ago I told you that I was doing a video with Cancer52 ...

jillydabrat

•4 years ago

34 Replies

Hydrea etc

Does anyone know the criteria for going on Hydrea etc. I've had PV for 13 years and am on daily aspirin and venesections as and when required. Venesections...

Does anyone know the criteria for going on Hydrea etc. I've had PV for 13 years ...

mark382

•4 years ago

5 Replies

Jakavi vs. hydroxyurea

Does anybody take Jakavi to treat JAK2 ET? Is it better than hydroxyurea?

Sam2022

•4 years ago

5 Replies

Alternative to aspirin article

Chris Kresser has an interesting article on aspirin.

Mostew

•4 years ago

13 Replies

Success

My Haematoligist has agreed to put me on interferon. She has said it may not help with the fatigue, hopefully she is wrong. She also says the breathlessness...

My Haematoligist has agreed to put me on interferon. She has said it may not hel...

ciye

•4 years ago

25 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2021

News Flash

Info on ET to educate Physicians/GPs!

Jak 2 test

Pegasys update

Family of anti vaccines

Daisy-May

PV Symptom Chart

Storage of Pegasus interferon

Well, I did it

Platelet count 492 ESR & CRP elevated

Can you C Us Campaign

UPDATE: WARWICK's ASCT Journey...

PV, asthma and high B12

Hydroxy, shoulder and back pain

CRISPR injected into the blood treats a genetic disease for first time

B12

PV and fatigue

Any tips for dealing with fatigue?

Progressively Higher Platelets, can this be the cause of my symptoms?

Jakavi

Functional Consequences of Mutations in Myeloproliferative Neoplasms

My wife has been discharged from hospital

Getting frustrated with the delay approval of ropeg In the US

Lightheaded, rheumatology appointment

Introduction of myself, PMF, from China

Parliamentary launch of “Do You C Me?”

Hydrea etc

Jakavi vs. hydroxyurea

Alternative to aspirin article

Success

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