Posts - MPN Voice | HealthUnlocked

MPN Voice

10,437 members • 14,387 posts

All posts for August 2022

Headaches taking Hydroxyurea

I have been taking 500 mg Hydroxyurea daily for a month. Have headaches every day. Is anyone having issues with this? I see the hematologist again...

I have been taking 500 mg Hydroxyurea daily for a month. Have headaches eve...

Mirror368

•2 years ago

12 Replies

Exhaustion has me flattened…

I have had phlebotomies since January. I got a break from May to June from them. Had another in July and one in August where they took 600ml. My Dr increased...

I have had phlebotomies since January. I got a break from May to June from them....

Wewo01

•2 years ago

29 Replies

Webinar – Thriving with MPNs: Your role in managing your treatment and care

PEN (Patient Empowerment Network) is hosting a MPN webinar on Tuesday, 20th September 2022, entitled Thriving with MPNs: Your Role in Managing Your Treatment...

PEN (Patient Empowerment Network) is hosting a MPN webinar on Tuesday, 20th Sept...

Mazcd

Partner•2 years ago

3 Replies

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increased effects of hydroxycarbamide and Anagrelide due to CKD

My wife has MF and now CKD of the one kidney she has left, the drugs for her MF are affecting the FBC more so than previously.i asked her hematologist if it...

My wife has MF and now CKD of the one kidney she has left, the drugs for her M...

jointpain

•2 years ago

3 Replies

Covid vaccine or No Covid vaccine

Hi Guys I have Primary Myelofibrosis. Bloods cells slowly going south platelets in the 60s red blood cells in the 90s. Still on the watch and wait treatment...

Hi Guys I have Primary Myelofibrosis. Bloods cells slowly going south platelet...

Grizly

•2 years ago

13 Replies

Report on Current MPN research, and lots of other stuff

This report has a nice graphic on current MPN research. There have been posts on this before too but this one is particularly colorful. Some we know are...

This report has a nice graphic on current MPN research. There have been posts o...

EPguy

•2 years ago

6 Replies

Autumn vaccinations

I am trying to find information about best timing for the autumn Covid booster and flu vaccinations in UK? I booked both online through NHS site with no...

I am trying to find information about best timing for the autumn Covid booster ...

Inclement

•2 years ago

6 Replies

What and Why is IFN Pegylation?

I found this report that has a particularly clear concept illustration of IFN and pegylation. https://www.futuremedicine.com/doi/10.2217/fon-2022-0596...

I found this report that has a particularly clear concept illustration of IFN an...

EPguy

•2 years ago

1 Reply

Besremi side effect?

At 60 years old I have my first cold sore. 😷 I belong to a Besremi support group and a few people are correlating a link between the shot and developing a...

At 60 years old I have my first cold sore. 😷 I belong to a Besremi support gr...

Barbiebreath

•2 years ago

5 Replies

Almost 1 yr on Peg - Update

Just realized that I started taking Peg in late September 2021...it has been quite a ride. Briefly: diagnosed with ET Jak2+ officially in Dec 2020 via BMB (but...

Just realized that I started taking Peg in late September 2021...it has been qui...

Solyesh

•2 years ago

15 Replies

mosquito repellent

Thank you for all the advice I will try a few of these options and let you know how it goes, Kefalonia here we come.

Thank you for all the advice I will try a few of these options and let you know ...

Murdoch01

•2 years ago

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List of MPN Specialists UK

having recently joined and read through a whole host of the posts on hear I realise that seeing anMPN specialist would be good. What I can'tfind is a list of...

having recently joined and read through a whole host of the posts on hear I rea...

DougyW

•2 years ago

3 Replies

pre fibrotic myelofibrosis

Hi all hope your well. Could anyone help me I had a BMB nad results say I have Pre Fibrotic myelofibrosis changes not sure what this means I have ET...

Hi all hope your well. Could anyone help me I had a BMB nad results say I...

JeniMac

•2 years ago

45 Replies

mosquito repellent

I am going on holiday and would like to know if anybody knows of something natural I can use that would keep the mosquitos away? I can’t stand the poisonous...

I am going on holiday and would like to know if anybody knows of something natur...

Murdoch01

•2 years ago

12 Replies

I think this will amuse everyone !!!

17th Century Nun's Prayer By Ed Forry December 29, 2016 Lord, thou knowest better than I know myself that I am growing older and will some day be old....

17th Century Nun's Prayer By Ed Forry December 29, 2016 Lord, thou knowe...

Mostew

•2 years ago

19 Replies

Can someone explain to me the below graph? I want to understand what is the total percentage of "true"ET progression in these 30 years.

also what does "cumulative incidence" shows? Is the total percentage of people that progressed?

also what does "cumulative incidence" shows? Is the total percentage of people ...

Aneliv9

•2 years ago

16 Replies

Some Info on mRNA Dose vs Effect

I've posted on the different dose sizes used in the mRNA covid vaxes. Moderna uses a higher dose than Pfizer for all available adult shots, booster...

I've posted on the different dose sizes used in the mRNA covid vaxes. Moderna...

EPguy

•2 years ago

4 Replies

Travel Insurance

I know this has been asked a lot of times,but when I do search I get all information for all types of diseases. I'm looking if anyone has managed to get...

I know this has been asked a lot of times,but when I do search I get all infor...

mark382

•2 years ago

8 Replies

I’m falling to bits!!! Shingles now

hi all, Well update on me is that I have just started and had my first interferon injection for my ET on Thursday as I am suffering with various systems but...

hi all, Well update on me is that I have just started and had my first interfe...

Grendall

•2 years ago

6 Replies

Gastroscopy Procedure Query

Hi. Just wondered if anyone has had a gastroscopy with PV on Hydroxy and aspirin? I need to have some polyps removed and the letter says I should just...

Hi. Just wondered if anyone has had a gastroscopy with PV on Hydroxy and aspiri...

MWxxxx

•2 years ago

8 Replies

Finally had BMB. Now diagnosed with MF, should I go on a trial and other questions!

I’d been putting off having a bone marrow biopsy since last November, finally had it, the stress was worse than the actual thing and the gas and air was...

I’d been putting off having a bone marrow biopsy since last November, finally h...

Joetcalr

•2 years ago

19 Replies

Taking Hydroxycarbamide?…

I just passed 60 years, and I’m in great shape and leading a healthy and active lifestyle. I have a chronic state of high blood platelets (around 650,000...

I just passed 60 years, and I’m in great shape and leading a healthy and active ...

Holden65

•2 years ago

78 Replies

New research on NSAID's and inflammation

From Rhonda Patrick, PHD. Can chronic use of anti-inflammatory agents paradoxically promote chronic inflammation through compensatory host response?...

From Rhonda Patrick, PHD. Can chronic use of anti-inflammatory agents parado...

Elizka

•2 years ago

2 Replies

Has anyone tried alternate anti-inflammatory agents for MPNs?

Hello everyone, I haven't posted in a while as I've been working on my mindfullness and trying not to worry so much about my MPN. Long story short: I've...

Hello everyone, I haven't posted in a while as I've been working on my mindfull...

Lena70

•2 years ago

28 Replies

PV and CML?

hi just diagnosed with PV JAK2+ve. I also have 1 type of my white cells slightly high. Could I have CML at the same time as PV. My hospital notes had CML?

hi just diagnosed with PV JAK2+ve. I also have 1 type of my white cells slightl...

DougyW

•2 years ago

14 Replies

1st day on Ruxolitinib

The doctor took me off both Hydroxy and Anagrelide to start on new medication Ruxolitinib 20mg x2 daily. im a bit nervous about it, as I gained a lot of...

The doctor took me off both Hydroxy and Anagrelide to start on new medication Ru...

wendycu

•2 years ago

6 Replies

Sudden Anaemia !

Hello I have E T and my platelets are down to 250, but my Haemo consultantant is concerned that I am quite anaemic and wonders why this is ? I had Bowel...

Hello I have E T and my platelets are down to 250, but my Haemo consultantant i...

Ratton

•2 years ago

9 Replies

Eight months: Besremi Update

UPDATE: 9/12/2022 two weeks after previous CMP. Besremi dose at 150mg. My ALT was is the normal range at 31. It dropped nine points. As ET guy suggested...

UPDATE: 9/12/2022 two weeks after previous CMP. Besremi dose at 150mg. My ALT...

Elizka

•2 years ago

29 Replies

Holiday insurance and meds

I'm sure this has been dealt with many times. After many years we are off on holdays abroad. Either Greece or Germany. I've had a quote from staysure, I have...

I'm sure this has been dealt with many times. After many years we are off on hol...

Mal42

•2 years ago

1 Reply

Blasts - are they a total blast or a blasted nuisance?

Hi everyone, I've been experiencing more tiredness since January this year, with less stamina and energy. My hemiplegic migraines have also become more...

Hi everyone, I've been experiencing more tiredness since January this year, wit...

LucyGeering

•2 years ago

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Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2022

Headaches taking Hydroxyurea

Exhaustion has me flattened…

Webinar – Thriving with MPNs: Your role in managing your treatment and care

increased effects of hydroxycarbamide and Anagrelide due to CKD

Covid vaccine or No Covid vaccine

Report on Current MPN research, and lots of other stuff

Autumn vaccinations

What and Why is IFN Pegylation?

Besremi side effect?

Almost 1 yr on Peg - Update

mosquito repellent

List of MPN Specialists UK

pre fibrotic myelofibrosis

mosquito repellent

I think this will amuse everyone !!!

Can someone explain to me the below graph? I want to understand what is the total percentage of "true"ET progression in these 30 years.

Some Info on mRNA Dose vs Effect

Travel Insurance

I’m falling to bits!!! Shingles now

Gastroscopy Procedure Query

Finally had BMB. Now diagnosed with MF, should I go on a trial and other questions!

Taking Hydroxycarbamide?…

New research on NSAID's and inflammation

Has anyone tried alternate anti-inflammatory agents for MPNs?

PV and CML?

1st day on Ruxolitinib

Sudden Anaemia !

Eight months: Besremi Update

Holiday insurance and meds

Blasts - are they a total blast or a blasted nuisance?

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2022

Headaches taking Hydroxyurea

Exhaustion has me flattened…

Webinar – Thriving with MPNs: Your role in managing your treatment and care

﻿increased effects of hydroxycarbamide and Anagrelide due to CKD

Covid vaccine or No Covid vaccine

Report on Current MPN research, and lots of other stuff

﻿Autumn vaccinations

What and Why is IFN Pegylation?

Besremi side effect?

Almost 1 yr on Peg - Update

mosquito repellent

﻿List of MPN Specialists UK

﻿pre fibrotic myelofibrosis

mosquito repellent

I think this will amuse everyone !!!

﻿Can someone explain to me the below graph? I want to understand what is the total percentage of "true"ET progression in these 30 years.

Some Info on mRNA Dose vs Effect

﻿Travel Insurance

I’m falling to bits!!! Shingles now

Gastroscopy Procedure Query

Finally had BMB. Now diagnosed with MF, should I go on a trial and other questions!

Taking Hydroxycarbamide?…

New research on NSAID's and inflammation

Has anyone tried alternate anti-inflammatory agents for MPNs?

﻿PV and CML?

1st day on Ruxolitinib

Sudden Anaemia !

Eight months: Besremi Update

Holiday insurance and meds

Blasts - are they a total blast or a blasted nuisance?

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

increased effects of hydroxycarbamide and Anagrelide due to CKD

Autumn vaccinations

List of MPN Specialists UK

pre fibrotic myelofibrosis

Can someone explain to me the below graph? I want to understand what is the total percentage of "true"ET progression in these 30 years.

Travel Insurance

PV and CML?