Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for April 2022

Taken the antivirals

I have completed the 5 days of antivirals started on Day 3 .Within 24 hours of starting the course my symptoms had improved and each day I fell better than the...

I have completed the 5 days of antivirals started on Day 3 .Within 24 hours of s...

JabON

•2 years ago

2 Replies

Besremi - CBC after the 5th dose kept at 200 mcg

Just want to share my Besremi experience for anything to be learned from it. Above picture shows my CBC after the 5th dose (results of 4/16/2022; 1st dose...

Just want to share my Besremi experience for anything to be learned from it. Abo...

Pat032018

•2 years ago

16 Replies

Fed up

Interferon not bringing platelets down, 135mcg, haemo does not believe that it will on its own. Adding 500mg of HU to see if that will help, urgh not happy but...

Interferon not bringing platelets down, 135mcg, haemo does not believe that it w...

ciye

•2 years ago

5 Replies

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Guy’s telephone appt on Tuesday. Advice and questions to ask please.

Morning everyone and happy Easter if you celebrate. I’m so grateful for this board and the information and support you all share. Thank you. I asked my gp to...

Morning everyone and happy Easter if you celebrate. I’m so grateful for this bo...

SarahPV

•2 years ago

18 Replies

5th vaccine

Happy Easter to everyone, I have been offered my 5th Covid vaccine for this week. (I am PVR Jak 2 ) My 4th vaccine was 3 months ago. Has anyone else had their...

Happy Easter to everyone, I have been offered my 5th Covid vaccine for this week...

Bobadog

•2 years ago

31 Replies

Covid

I tested positive for covid today, my husband has had a bad chest for a few days but his covid test on Thursday was negative, today though it was positive, so...

I tested positive for covid today, my husband has had a bad chest for a few days...

lizzziep

•2 years ago

30 Replies

News on new MF therapy Momelotinib

I just saw in the business news that Glaxo Co is buying an MF drug maker, Sierra Oncology, for its new drug Momelotinib. Implication is Glaxo expects FDA...

I just saw in the business news that Glaxo Co is buying an MF drug maker, Sierra...

EPguy

•2 years ago

12 Replies

Twitching nerve in eyelid and slight one- sided migraine -like headache a symptom of E.T.?

I am experiencing these symptoms recently over last couple of weeks. I have always suffered with Migraine but grew out of it latterly and haven’t had bad...

I am experiencing these symptoms recently over last couple of weeks. I have alwa...

azaelea

•2 years ago

18 Replies

Bomedemstat Trial Update

Hello all. Just thought I’d post an update since it has been one month since I have been on the bomedemstat in the clinical trial. My platelets began at close...

Hello all. Just thought I’d post an update since it has been one month since I h...

Miriammusic

•2 years ago

28 Replies

Platelets up to 1500 since starting PEG interferon

Hello all, I hope you keeping well. I’m feeling pretty deflated, looking for some advice based on the huge amount of knowledge and experience on this forum....

Hello all, I hope you keeping well. I’m feeling pretty deflated, looking for so...

Nickyanne

•2 years ago

25 Replies

Paraneoplastic disorder associated with MF

I was diagnosed with MF last year and from around that time I've suffered tingling which has spread from my extremities to most of my body. In case it was...

I was diagnosed with MF last year and from around that time I've suffered tingli...

Scaredy_cat

•2 years ago

3 Replies

Primary or secondary PV?

Hi everyone, as always really grateful for this Forum and the wealth of support and information it provides. Brief background to my question; diagnosed PV...

Hi everyone, as always really grateful for this Forum and the wealth of support ...

Imkerin

•2 years ago

6 Replies

DALIAH INF-HU trial new data analysis

This just came out. It is a treasure of info that I could spend many hours on. Just a couple bits:...

This just came out. It is a treasure of info that I could spend many hours on....

EPguy

•2 years ago

8 Replies

New research suggests cancer patients with non-O blood types face an increased blood clot risk

« A new Blood Advances study suggests that people with cancer and non-O blood types, such as types A, B, and AB, face an increased risk of developing venous...

« A new Blood Advances study suggests that people with cancer and non-O blood ty...

Manouche

•2 years ago

4 Replies

New here, question on blood pressure, fatigue

Hi, great to discover this forum, and read about others' experiences! I was diagnosed with PV and the JAK2 V617F mutation in June 2021, after suffering a heart...

Hi, great to discover this forum, and read about others' experiences! I was diag...

Sewingtime

•2 years ago

12 Replies

Private MPN in Uk

Has anyone gone private in the UK for an MPN specialist, have tried getting referrals from my Gp & Haematologist on the NHS because my platelets are good and I...

Has anyone gone private in the UK for an MPN specialist, have tried getting refe...

Mustang50

•2 years ago

33 Replies

Update 3 on appointment

Glad to see my Haematologist is being proactive. I wonder if it is being firm in mentioning MPN Specialist and learning so much from everyone here before my...

Glad to see my Haematologist is being proactive. I wonder if it is being firm in...

LittleLuna

•2 years ago

21 Replies

Anyone who was interested in qi gong

I’ve just noticed Mimi Kuo Deemer has done a beginner’s hour long session on Utube . . . Very simple and inspiring

I’ve just noticed Mimi Kuo Deemer has done a beginner’s hour long session on U...

Mostew

•2 years ago

7 Replies

New Member

Hi New to this but thought I would say hi and thank you to MPN voice for all that they are doing 😊. I was diagnosed with MF in 2007 aged 43 following a...

Hi New to this but thought I would say hi and thank you to MPN voice for all tha...

jacquelineruth2000

•2 years ago

26 Replies

Jakavi and Paxlovid interaction

Jakavi and Paxlovid interaction I have been trying unsuccessfully to find information online to my question. Does anybody know if a patient currently taking...

Jakavi and Paxlovid interaction I have been trying unsuccessfully to find info...

Ticotopia

•2 years ago

9 Replies

Sanguina AnemoCheck Mobile Hb self test

A while ago Manouche posted the new AnemoCheck test for mobile. I installed it and tried. In this app I get consistently low Hb results of ~12.3 while my...

A while ago Manouche posted the new AnemoCheck test for mobile. I installed it ...

EPguy

•2 years ago

5 Replies

no successful with accessing local CMDU for antivirals

Tested positive for Covid on Saturday. I have ET and take hydroxycarbamide so I contacted 111 after logging my positive LFT on the NHS website. I followed...

Tested positive for Covid on Saturday. I have ET and take hydroxycarbamide so I...

JabON

•2 years ago

5 Replies

Painkillers while on Hydroxycarbamide for treatment of Polycythaemia Vera

Has anyone with PV and taking Hydroxycarbamide been advised not to take Ibroprfen or any similar painkillers ending in fen?

Has anyone with PV and taking Hydroxycarbamide been advised not to take Ibroprfe...

Edinburgh1953

•2 years ago

19 Replies

BMB

Diagnosed with et mpl positive 18 months ago.consultant said she didn’t Need to put me through an uncomfortable bone marrow biopsy.is this normal practice.

Diagnosed with et mpl positive 18 months ago.consultant said she didn’t Need to ...

Bmj63

•2 years ago

37 Replies

5 th Jab

I had my 5 th jab on Thursday gone I’ve now had two Astra Zeneca and two Pfizer and latest one Moderna Still wear my mask and take all precautions when out in...

I had my 5 th jab on Thursday gone I’ve now had two Astra Zeneca and two Pfizer ...

PhilReade

•2 years ago

12 Replies

Are there no Covid guidelines at all now?

I heard of a very worrying situation this week. Apparently a check-out employee at our local Co-Op supermarket, although wearing a mask, was coughing...

I heard of a very worrying situation this week. Apparently a check-out employee ...

azaelea

•2 years ago

12 Replies

Qi gong

Good job I looked . It doesn’t work. It’s Mimi. kuo. Deemer Bone Marrow cleanse on. Utube

Good job I looked . It doesn’t work. It’s Mimi. kuo. Deemer Bone Marrow cleans...

Mostew

•2 years ago

4 Replies

Lovely simple qi gong for bone marrow cleanse

https://youtube.com/watch?v=HbWfnlolF9M&feature=share If anyone is interested in qi gong this short video is great for both beginners and more experienced

https://youtube.com/watch?v=HbWfnlolF9M&feature=share If anyone is interested in...

Mostew

•2 years ago

4 Replies

Daisy-May

Has anyone taken something for constipation while on HU not sure what to take..

Has anyone taken something for constipation while on HU not sure what to take.. ...

Daisy-May

•2 years ago

26 Replies

Blood type Data from our CBC's?

I've been curious on my blood type. It would seem we should automatically have this info from our routine tests, but if so I can't find it, and could be...

I've been curious on my blood type. It would seem we should automatically have ...

EPguy

•2 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2022

Taken the antivirals

Besremi - CBC after the 5th dose kept at 200 mcg

Fed up

Guy’s telephone appt on Tuesday. Advice and questions to ask please.

5th vaccine

Covid

News on new MF therapy Momelotinib

Twitching nerve in eyelid and slight one- sided migraine -like headache a symptom of E.T.?

Bomedemstat Trial Update

Platelets up to 1500 since starting PEG interferon

Paraneoplastic disorder associated with MF

Primary or secondary PV?

DALIAH INF-HU trial new data analysis

New research suggests cancer patients with non-O blood types face an increased blood clot risk

New here, question on blood pressure, fatigue

Private MPN in Uk

Update 3 on appointment

Anyone who was interested in qi gong

New Member

Jakavi and Paxlovid interaction

Sanguina AnemoCheck Mobile Hb self test

no successful with accessing local CMDU for antivirals

Painkillers while on Hydroxycarbamide for treatment of Polycythaemia Vera

BMB

5 th Jab

Are there no Covid guidelines at all now?

Qi gong

Lovely simple qi gong for bone marrow cleanse

Daisy-May

Blood type Data from our CBC's?

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