Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,731 posts

All posts for June 2022

Flu like symptoms

Please forgive me if this is a stupid question. So… on Besremi - can have flu like symptoms. Does this mean you just feel like you are sick or are you...

Please forgive me if this is a stupid question. So… on Besremi - can have flu l...

Barbiebreath

•2 years ago

6 Replies

Second Pegasys injection and I’m weak as a kitten!

Update/ I took my second Pegasys yesterday evening. I sweat ALL night long. I feel fatigued and so weak. Also had a headache and some nausea last night. I...

Update/ I took my second Pegasys yesterday evening. I sweat ALL night long. I f...

Wewo01

•2 years ago

26 Replies

Happy Father’ s Day!

To all you awesome Dads on here! It’s a beautiful day here on Topsail Island, N.C. Im soaking up all the beauty and healing energy that I can! 😃

To all you awesome Dads on here! It’s a beautiful day here on Topsail Island,...

Barbiebreath

•2 years ago

4 Replies

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Does anyone have histamine intolerance?

Hi Just wondering if anyone out there has histamine intolerance which can be ( albeit rarely so don’t panic!) related to PV? Louise

Hi Just wondering if anyone out there has histamine intolerance which can be ( ...

Loubprv

Volunteer•2 years ago

9 Replies

Venesections making me feel worse.

Hello everyone 👋 Just wondering how everyone is getting on with having venesections. I was diagnosed with PV in September 2021. I had venesections every 2...

Hello everyone 👋 Just wondering how everyone is getting on with having venesec...

Mauritiu

•2 years ago

18 Replies

5th covid vaccination

Has anyone got a link to the letter for the 5th covid vaccination? I can't seem to find one for me. I'm on ruxolitinib and have MF

Has anyone got a link to the letter for the 5th covid vaccination? I can't seem ...

Scaredy_cat

•2 years ago

5 Replies

Oral thrush and hydroxycarbamide

Hi since starting on this treatment for ET, 8 months ago, I've had recurring oral thrush, the last episode started in feb and after tablets and various gels ,...

Hi since starting on this treatment for ET, 8 months ago, I've had recurring or...

Catbells66

•2 years ago

8 Replies

Help with veins please ?

Hi . I hope that someone can help me. I have had ET Jak 2 positive since 2019. I get my bloods taken approx. every 8 weeks.This week three nurses on different...

Hi . I hope that someone can help me. I have had ET Jak 2 positive since 2019. I...

Aquinas

•2 years ago

54 Replies

Meaning of the term “allele burden."

Hello! I should like to know the meaning of the term “allele burden” and its significance to a diagnosis of CAL-R positive ET. Does the term mean: (1)...

Hello! I should like to know the meaning of the term “allele burden” and its sig...

gilded

•2 years ago

2 Replies

HU versus Anagrelide

Hi all, My platelets have been slowly on the rise, currently 660. .I am on Hydroxycarbomide, 500mg for 6 days and 1000mg on the 7th. I am not able to increase...

Hi all, My platelets have been slowly on the rise, currently 660. .I am on Hydro...

UKZA

•2 years ago

12 Replies

EPO levels in ET and prognostics

We’ve seen some discussion of EPO levels and PV Dx. I am one of the members who has an unspecific mix of ET/PV and curious about EPO. I found a related...

We’ve seen some discussion of EPO levels and PV Dx. I am one of the members w...

EPguy

•2 years ago

10 Replies

Ibuprofen and aspirin

I have ET and normally take a 75mg aspirin alongside my Anagrelide, however my severe arthritis is having a major flare up, co-codamol isn’t touching it so I...

I have ET and normally take a 75mg aspirin alongside my Anagrelide, however my s...

lizzziep

•2 years ago

7 Replies

What pain killers can I take when on HU?

I am experiencing terrible pain in my left hip/ thigh and leg and slept for only one hour last night. I had an X-ray and blood tests on Wednesday and await the...

I am experiencing terrible pain in my left hip/ thigh and leg and slept for only...

Michali45

•2 years ago

25 Replies

Decision re 5th vaccine

Hi, I posted a couple of weeks ago about my dilemma whether or not to have 5th vaccine given I had covid about 6 weeks ago. I went along to vaccine centre and...

Hi, I posted a couple of weeks ago about my dilemma whether or not to have 5th v...

JP1952

•2 years ago

1 Reply

Hydroxycarbamide and Sun exposure

Title hopefully says it all, How careful do you have to be in and around sunshine whilst on hydroxycarbamide. Thanks

Title hopefully says it all, How careful do you have to be in and around sunshi...

Smudger0122

•2 years ago

24 Replies

Very High b12

Hello,Am a bit concerned. I have a very high b12 count from my last blood test,over 1300. Is it something to worry about? I don't take any supplements. Many...

Hello,Am a bit concerned. I have a very high b12 count from my last blood test,o...

keviekev

•2 years ago

5 Replies

Sunshine and hydro

Good morning all. Ive been on hydroxycarbamide for about 10 months now. Had a few problems to start with but now I seem to tolerate it well. I had read that...

Good morning all. Ive been on hydroxycarbamide for about 10 months now. Had a fe...

Cokopops

•2 years ago

6 Replies

Result!!

I found out that booster 4 and 5 were stopping end of June and I hadn't had a call. Sent an email to surgery with copy of Blood Cancer UK, GP letter. Had a...

I found out that booster 4 and 5 were stopping end of June and I hadn't had a ca...

mark382

•2 years ago

6 Replies

Besremi first dosage and abdominal cramping.

Hi Everyone, I took my first dose of Besremi last evening and the only side effect I am experiencing is pretty bad abdominal cramping. Has anyone had a...

Hi Everyone, I took my first dose of Besremi last evening and the only side effe...

JeanieRN

•2 years ago

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Need PV expert in Pennsylvania

I live in State College PA and have had PV for seven years. This is a small town and my local hematologist is not a PV expert. A year ago, I got a second...

I live in State College PA and have had PV for seven years. This is a small town...

sbs_patient

•2 years ago

2 Replies

Help

does any know a good private haematologist in north west England Liverpool Manchester or Wigan

does any know a good private haematologist in north west England Liverpool Manch...

Hidden

•2 years ago

4 Replies

Handy meds pot

Hi everyone If like me you can never remember if you’ve taken your meds/ vitamins, and you don’t want to fill your bag / pocket with a horrible plastic thing...

Hi everyone If like me you can never remember if you’ve taken your meds/ vitami...

Loubprv

Volunteer•2 years ago

4 Replies

Monthly blog dedicated to young people living with MPNs Alice’s ninth blog: Q&A with Dr Sophia Kaimaklioti

Coping with an MPN diagnosis and symptoms inevitably has an impact on our mental health and wellbeing, this month in her ninth blog for young people with MPNs,...

Coping with an MPN diagnosis and symptoms inevitably has an impact on our mental...

Mazcd

Partner•2 years ago

2 Replies

Headaches, Bloating and Weight Gain...sound familiar?

I think I'm on the lowest dose of hydroxy now (500mg daily) as my platelets have been normal for over 6 months. My biggest whinge are too my all too frequent...

I think I'm on the lowest dose of hydroxy now (500mg daily) as my platelets have...

Hidden

•2 years ago

24 Replies

Update 6.6

Just did a CBC on 06/13 - now after two 150mcg Besremi doses. Good news this time. HCT = 45.2% - down from 46.5% PLT = 350 - stable from 355 WBC = 2.65 - down...

Just did a CBC on 06/13 - now after two 150mcg Besremi doses. Good news this ti...

hunter5582

•2 years ago

21 Replies

First Peg jab

Been off HU for 26 days. Went for my Peg lesson and administered jab myself under instruction from my SCN this afternoon. Straight forward. Here's hoping that...

Been off HU for 26 days. Went for my Peg lesson and administered jab myself unde...

Cakeface

•2 years ago

12 Replies

BONE MARROW BIOPSY

Hello everyone. I am trinigirl from the Caribbean and have posted about my ET diagnosis before. I had problems with my doctor and his knowledge of this illness...

Hello everyone. I am trinigirl from the Caribbean and have posted about my ET di...

Trinigirl

•2 years ago

15 Replies

Besremi and Hematocrit Control

Closing in on five months on Besremi and my WBC and PLT's are now in the "normal" range, but HCT control continues to be elusive. I did get a 250ml PB on May...

Closing in on five months on Besremi and my WBC and PLT's are now in the "normal...

Elizka

•2 years ago

42 Replies

ET JAK2 positive

Hello all, This is my first post although I joined the forum about two years ago. Not sure why I haven’t posted sooner and not sure exactly where to start. I...

Hello all, This is my first post although I joined the forum about two years ago...

pjm03

•2 years ago

7 Replies

5th shot in the U.S.?

Hi everyone, I'm wondering whether others in the U.S. have managed to get 5th shots for Covid? If you go to the CDC website, there's a tool to find out whether...

Hi everyone, I'm wondering whether others in the U.S. have managed to get 5th sh...

souplover

•2 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2022

Flu like symptoms

Second Pegasys injection and I’m weak as a kitten!

Happy Father’ s Day!

Does anyone have histamine intolerance?

Venesections making me feel worse.

5th covid vaccination

Oral thrush and hydroxycarbamide

Help with veins please ?

Meaning of the term “allele burden."

HU versus Anagrelide

EPO levels in ET and prognostics

Ibuprofen and aspirin

What pain killers can I take when on HU?

Decision re 5th vaccine

Hydroxycarbamide and Sun exposure

Very High b12

Sunshine and hydro

Result!!

Besremi first dosage and abdominal cramping.

Need PV expert in Pennsylvania

Help

Handy meds pot

Monthly blog dedicated to young people living with MPNs Alice’s ninth blog: Q&A with Dr Sophia Kaimaklioti

Headaches, Bloating and Weight Gain...sound familiar?

Update 6.6

First Peg jab

BONE MARROW BIOPSY

Besremi and Hematocrit Control

ET JAK2 positive

5th shot in the U.S.?

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