Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for August 2021

blood testing

Does anyone know as yet the effect of cancellation of all non urgent blood testing throughout the UK due to major shortage of phials until at least mid...

Does anyone know as yet the effect of cancellation of all non urgent blood test...

Oscarsboy

•3 years ago

16 Replies

No blood testing in UK other than non urgent

Does anyone know as yet the effect of cancellation of all non urgent blood testing throughout the UK due to major shortage of phials until at least mid...

Does anyone know as yet the effect of cancellation of all non urgent blood test...

Oscarsboy

•3 years ago

3 Replies

Links

Does anyone know why I can never open links any more. Keeps saying bad request Thanks

Does anyone know why I can never open links any more. Keeps saying bad request T...

Mostew

•3 years ago

8 Replies

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Why am I told to continue with low dose aspirin when my platelets are only 70?

I have recently progressed from ET to MF

Scaredy_cat

•3 years ago

4 Replies

Starting on Pegasys

Went to MPN specialist yesterday and had my first shot of Peg - starting on 90mg/week (I was on 1,500mg daily of Hydroxy). For the time being he is also...

Went to MPN specialist yesterday and had my first shot of Peg - starting on 90mg...

Solyesh

•3 years ago

13 Replies

A good read for you "Techies" on inflammation and MPNs they begin to touch on treatment on slide 34 of the powerpoint.

https://library.ehaweb.org/eha/2018/stockholm/219199/steffen.koschmieder.inflammation.and.anti-inflammatory.approaches.in.mpn.html

https://library.ehaweb.org/eha/2018/stockholm/219199/steffen.koschmieder.inflamm...

IrishHiker

•3 years ago

5 Replies

How I've Been Handling PV

I highly respect this forum and the sharing of experiences. I would like to share my experiences. I have had Polycythemia Vera for over 15 years. I am 79 years...

I highly respect this forum and the sharing of experiences. I would like to shar...

honor2012

•3 years ago

13 Replies

What the heck

Am I crazy. This is what I have been prescribed and why I am so ill. This is 4 times the recommended starting dose.

Am I crazy. This is what I have been prescribed and why I am so ill. This is 4 t...

jillydabrat

•3 years ago

16 Replies

What levels are safe to travel overseas?

Does anyone know what blood levels are safe to travel overseas as my husband was diagnosed earlier this year with MF. We understand that haemoglobin needs to...

Does anyone know what blood levels are safe to travel overseas as my husband was...

tandtcats

•3 years ago

4 Replies

Recently diagnosed with PV

Hi everyone, this is first time I am posting here. I am a member of this forum already few months and I am really happy I've found this forum with all these...

Hi everyone, this is first time I am posting here. I am a member of this forum a...

DariBee

•3 years ago

15 Replies

Change to Interferon - feeling awful

Hi friends I am on my third week of interferon and I am feeling awful. I still have the big red blotches on my stomach but I also feel very swimmy and dizzy...

Hi friends I am on my third week of interferon and I am feeling awful. I still...

jillydabrat

•3 years ago

31 Replies

MPN Consultant - NE England

Is anyone here living in Northumberland? If so what hospital do you get monitored at? I’ve been having 6 month reviews at Freeman in Newcastle. I’ve had 3...

Is anyone here living in Northumberland? If so what hospital do you get monitore...

Anniepops112

•3 years ago

1 Reply

Sugar

No sure if this will help anyone. My husband has been diagnosed 3 years ago with ET Jak 2 at 42. He has suffered with headaches quite often and feeling very...

No sure if this will help anyone. My husband has been diagnosed 3 years ago wit...

carlagb

•3 years ago

9 Replies

Normalization of CBC without medical treatment

Has anyone on this forum diagnosed with ET/PV with corresponding elevation in hemoglobin, hematocrit, RBC and platelet experience normalization (meaning CBC...

Has anyone on this forum diagnosed with ET/PV with corresponding elevation in ...

markgenious1981

•3 years ago

4 Replies

Turmeric instead of low dose daily aspirin

Hi everyone… I’m considering replacing my daily low dose aspirin with turmeric…. Has anyone done this and how much turmeric should I take in a supplement?

Hi everyone… I’m considering replacing my daily low dose aspirin with turmeric…....

Hidden

•3 years ago

26 Replies

Third Covid Vaccine

Has anyone had a third covid vaccine? When I contacted my hemo they said they were recommending it. I’m on Pegasys and wasn’t sure if I was considered...

Has anyone had a third covid vaccine? When I contacted my hemo they said they w...

DN515

•3 years ago

24 Replies

Menopause, HRT and MPNs

Does anyone here know the safety of HRT with MPNs? I'm just wanting to prepare myself as think I'm perimenopausal and would like to be informed. I don't think...

Does anyone here know the safety of HRT with MPNs? I'm just wanting to prepare m...

LRH1977

•3 years ago

17 Replies

Cold sores

I was diagnosed in June 2019 with ET JAK 2 I am on Hydroxy and baby aspirin. Have any of you suffered with cold sores on mouth I am finding it very painful and...

I was diagnosed in June 2019 with ET JAK 2 I am on Hydroxy and baby aspirin. Hav...

Tilly_Rose

•3 years ago

14 Replies

MPN PV

Is there anyone with MPN PV , with elevated white cells and platelets ? I want to know how are being they treated even if low risk category. ( age less than 60...

Is there anyone with MPN PV , with elevated white cells and platelets ? I want t...

neela2020

•3 years ago

10 Replies

PV can take vitamin D3...?

hi there, Does anyone with PV could share their experienced taken high doses vitamin D3....?

hi there, Does anyone with PV could share their experienced taken high doses vit...

william-Indo

•3 years ago

5 Replies

ET with RAPID SPIKE in Platets

I was diagnosed with ET (with CALR genetic mutation) a few months ago and my platelets which had steadily been rising the last few years suddenly started...

I was diagnosed with ET (with CALR genetic mutation) a few months ago and my pla...

GrammyG

•3 years ago

8 Replies

Newly diagnosed with ET Jak2+

Hi, I’m newly diagnosed. My platelets are around 700 so not massively high. For the past couple of years my brain fog has been getting increasingly worse and...

Hi, I’m newly diagnosed. My platelets are around 700 so not massively high. For ...

Edinburgh_Unicorn

•3 years ago

17 Replies

This sounds promising from Bloodcancer UK

https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/covid-vaccine-blood-cancer/covid-antibody-treatment/?utm_source=facebook.com&utm_medium=referral

https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/covid-vaccine-bl...

jillydabrat

•3 years ago

1 Reply

Video of the MPN Voice ‘Virtual’ Patients’ Forum – London, now available to view

Held on Wednesday 25th August 2021 The video of the forum is now available to view on the MPN Voice YouTube channel. Click on the link below to view the...

Held on Wednesday 25th August 2021 The video of the forum is now available to vi...

Mazcd

Partner•3 years ago

2 Replies

Iron deficiency and PV(phlebotomy)

Hi all,Has anyone had any experience of hepcidin therapy instead of repeated venesections to control the HCTor instead of cytoreductive therapy etc. This could...

Hi all,Has anyone had any experience of hepcidin therapy instead of repeated ven...

Bobadog

•3 years ago

12 Replies

First Stem Cell Transplant Appointment done

Thanks to everyone who replied to my first post on this. My husband and I stayed over in Southampton and we got home today. To my great relief, the consultant...

Thanks to everyone who replied to my first post on this. My husband and I stayed...

Otterfield

•3 years ago

34 Replies

Pre MF

Has anyone been diagnosed with pre fibrotic mf but being treated as et because of high platelets?

Has anyone been diagnosed with pre fibrotic mf but being treated as et because o...

otisthedog

•3 years ago

29 Replies

MPN Awareness Day 9 September 2021

Just flagging up to help raise awareness. https://www.voicesofmpn.com/mpn-awareness-day.aspx

Just flagging up to help raise awareness. https://www.voicesofmpn.com/mpn-awar...

Hidden

•3 years ago

1 Reply

Inferring the dynamic of mutated hematopoietic stem cells induced by IFNα

« Our data support the hypothesis that IFNα targets JAK2V617F HSC by inducing their exit from quiescence and differentiation into progenitors. Our observations...

« Our data support the hypothesis that IFNα targets JAK2V617F HSC by inducing th...

Manouche

•3 years ago

3 Replies

Clopidogrel metallic taste

A few weeks ago, my consultant changed my meds from aspirin to clopidogrel , recently I have been struggling with a metallic taste in my mouth... I may revert...

A few weeks ago, my consultant changed my meds from aspirin to clopidogrel , rec...

shiftzz

•3 years ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2021

blood testing

No blood testing in UK other than non urgent

Links

Why am I told to continue with low dose aspirin when my platelets are only 70?

Starting on Pegasys

A good read for you "Techies" on inflammation and MPNs they begin to touch on treatment on slide 34 of the powerpoint.

How I've Been Handling PV

What the heck

What levels are safe to travel overseas?

Recently diagnosed with PV

Change to Interferon - feeling awful

MPN Consultant - NE England

Sugar

Normalization of CBC without medical treatment

Turmeric instead of low dose daily aspirin

Third Covid Vaccine

Menopause, HRT and MPNs

Cold sores

MPN PV

PV can take vitamin D3...?

ET with RAPID SPIKE in Platets

Newly diagnosed with ET Jak2+

This sounds promising from Bloodcancer UK

Video of the MPN Voice ‘Virtual’ Patients’ Forum – London, now available to view

Iron deficiency and PV(phlebotomy)

First Stem Cell Transplant Appointment done

Pre MF

MPN Awareness Day 9 September 2021

Inferring the dynamic of mutated hematopoietic stem cells induced by IFNα

Clopidogrel metallic taste

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