Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for July 2022

CBD oil for pain?

hi folks. Anyone use CBD oil for pain? Now that I cannot take NSAIDs I have a huge rise in anti inflamm pain. I have tried codeine with no impact. Also not...

hi folks. Anyone use CBD oil for pain? Now that I cannot take NSAIDs I have a...

LittleLuna

•2 years ago

14 Replies

NGS Panel - Multiple Mutations/ Does Order Matter?

Going over my medical records just realized that the MPN specialist ordered a full NGS panel when he did the BMB - I had thought we had just determined the...

Going over my medical records just realized that the MPN specialist ordered a fu...

Solyesh

•2 years ago

5 Replies

stinging itch

I have been free of the stinging itch for nearly 4 years thanks to ruxolitinib but has all of a sudden returned and I wondered if the same has happened anyone...

I have been free of the stinging itch for nearly 4 years thanks to ruxolitinib b...

S031251

•2 years ago

9 Replies

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MF high risk Mutations

This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy...

This has been covered in some form before. But I came across this report that s...

EPguy

•2 years ago

34 Replies

ET diagnosed at 85 yrs. Failed HU because of side effects but platelets down to 555. Considering age and quality of life issues..........

What we would like to know is what approaches have other 85 yr olds taken. My husband is CALR pos. No hx of Thrombotic event. Has h/o borderline kidney disease...

What we would like to know is what approaches have other 85 yr olds taken. My hu...

endlessfun

•2 years ago

18 Replies

Besremi - CBC after the 11th dose kept at 175mcg

Just want to share my Besremi experience for anything to be learned from it. Above picture shows my CBC after the 11th dose (results of 7/19/2022; 1st dose...

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

Pat032018

•2 years ago

50 Replies

Happy HCT!

Blood drawn yesterday. Hct- 43.5! 😃👍😃

Barbiebreath

•2 years ago

10 Replies

Interferon and alcohol interaction

Hi all! Since starting Pegasys about a year ago I've found that I struggle to drink alcohol anymore. I've never drunk heavily (would drink on average twice a...

Hi all! Since starting Pegasys about a year ago I've found that I struggle to d...

cgcheets

•2 years ago

9 Replies

vitamin B12 supplement ( 21 cyanocobalamin) and polycythemia

Hi everyone, My gp tells me that my vitamin B12 levels are quite low ( occasional numb toes and mouth ulcers) and has prescribed a strongish Vitamin B12...

Hi everyone, My gp tells me that my vitamin B12 levels are quite low ( occasion...

Loubprv

Volunteer•2 years ago

25 Replies

chickenpox

my grandson has been vaccinated for chickenpox, which I believe is a live vaccine. I have primary intermediate MF, sarcoidosis and heart disease. I have had...

my grandson has been vaccinated for chickenpox, which I believe is a live vaccin...

artydutch

•2 years ago

4 Replies

Medixation

Hello, Is anyone on rivaroxaban and bisoprolol and hydroxycarbamide and have any side effects.? I feel tired and breathless all the time with back pain and...

Hello, Is anyone on rivaroxaban and bisoprolol and hydroxycarbamide and have any...

Juliet46

•2 years ago

12 Replies

An antibody for myelofibrosis – “that’s a true discovery”

Recently, one of our MATES members showed me this (extract) article (MiaGrace), & I believe that many others might wish to see it too... A new monoclonal...

Recently, one of our MATES members showed me this (extract) article (MiaGrace)...

socrates_8

•2 years ago

30 Replies

Travel Insurance to Spain with MF

Hi All, I thought I would share my experience with finding travel insurance for Europe/Spain. I have found that when looking for insurance single trip to...

Hi All, I thought I would share my experience with finding travel insurance for...

FAM_KT

•2 years ago

4 Replies

Post Shingle Aciclovir

I had the vaccine 2017 (the older one which is less effective). I got Shingles six weeks ago and four days in started Aciclovir. It was in my right side face....

I had the vaccine 2017 (the older one which is less effective). I got Shingles s...

omits

•2 years ago

12 Replies

pin and needle like sensation in back

my husband got diagnosed with ET Calr type 1 last month not on any medication yet but past month has been having a pain in his back upper left side below the...

my husband got diagnosed with ET Calr type 1 last month not on any medication ye...

Green1988

•2 years ago

3 Replies

20 year mystery continues

Hello all So slight update after seeing a haematologist this week. I won’t repeat my story and bore everyone again but anyone interested see my previous......

Hello all So slight update after seeing a haematologist this week. I won’t repe...

Chaucer89

•2 years ago

9 Replies

just wondering

hi lovely friends , I was just wondering am lucky enough to be able to go on holiday in September I had the go ahead from the doctor at the hospital today,...

hi lovely friends , I was just wondering am lucky enough to be able to go on hol...

Staroftheday

•2 years ago

7 Replies

Update

just got a call to say that my husband's JAK2 results are back. They wanted to discuss it with him over the phone but I pointed out he has major brain...

just got a call to say that my husband's JAK2 results are back. They wanted to...

CelticCrow68

•2 years ago

4 Replies

% JAK2 and Neutrophils (I think!)

A while back one of my Hems said that % JAK2 rises/falls with, I think he said Neutrophils but might have been Lymphocytes. I’m sorry but I can’t remember the...

A while back one of my Hems said that % JAK2 rises/falls with, I think he said ...

Paul123456

•2 years ago

5 Replies

Any experience Leeds haematologists?

morning all, Just reading through a few posts and wondering if anyone is from my area and had experience at Leeds St James with Hemo’s and if they are MPN...

morning all, Just reading through a few posts and wondering if anyone is from m...

Grendall

•2 years ago

7 Replies

Besremi

I am about to start Besremi. Just looking for some reassurance. I am 40 year old working mom. I was diagnosed over a year ago. My HCT has been great, 8 mos...

I am about to start Besremi. Just looking for some reassurance. I am 40 year o...

KLCTJC

•2 years ago

36 Replies

Besremi - Sore throat, swollen/bleeding gums

Title says it all. These are some of the more serious side effects I'm having from Besremi. Symptoms follow injection by roughly 5-7 days. Please post if you...

Title says it all. These are some of the more serious side effects I'm having fr...

jon1972

•2 years ago

14 Replies

Post Covid infection - nearly 4 weeks since positive test and treated with antivirals - have ET and still feel awful

Hi I tested positive with covid 4 weeks ago and was prescribed antivirals as I have ET. I tested positive for 6 days only and after 10 days felt loads better...

Hi I tested positive with covid 4 weeks ago and was prescribed antivirals as I ...

BeckyDing

•2 years ago

18 Replies

Painful hip and leg pain

Still waiting on results of bone marrow , after being newly diagnosed withET. Hip and leg ever painful, can anyone advise if this is a symptom of ET, or just...

Still waiting on results of bone marrow , after being newly diagnosed withET. H...

Hannah2308

•2 years ago

10 Replies

don’t know how I should feel

am feeling confused scared then ok I got diagnosed last month with ET and the Jak2 am currently taking aspirin go to see the doctors tomorrow

am feeling confused scared then ok I got diagnosed last month with ET and the Ja...

Staroftheday

•2 years ago

12 Replies

E2T2 mutation

Hello everyone one Thank you for reading my second post, I am still trying to get my head around my new diagnosis I have just asked my haematologist dept,...

Hello everyone one Thank you for reading my second post, I am still trying to g...

Tyray123

•2 years ago

4 Replies

Medication PV advice please

Hi everyone, am newly diagnosed with PV and know at next appt will have discussion around meds, I am 60 no thrombosis events, I am finding it all so...

Hi everyone, am newly diagnosed with PV and know at next appt will have discuss...

Cityreach

•2 years ago

58 Replies

interferon and psoriasis

morning I have an appointment with haematology at St James hospital Leeds this week to discuss changing from hydroxia to interferon. Comments have already...

morning I have an appointment with haematology at St James hospital Leeds this ...

2212df

•2 years ago

9 Replies

New member introduction

First I would like to thank everyone who contributes to this forum. I've only been a member for a couple of days, but already appreciate the helpful knowledge...

First I would like to thank everyone who contributes to this forum. I've only be...

PupsBestFriends

•2 years ago

9 Replies

Fundraising News –September Blood Cancer Awareness Month challenge ‘Walk to Support’ and the St Thomas’ Abseil

Walk to Support We're excited to announce our new global fundraising challenge for September Blood Cancer Awareness Month and the 10th annual MPN...

Walk to Support We're excited to announce our new global fundraising challenge...

Mazcd

Partner•2 years ago

1 Reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2022

CBD oil for pain?

NGS Panel - Multiple Mutations/ Does Order Matter?

stinging itch

MF high risk Mutations

ET diagnosed at 85 yrs. Failed HU because of side effects but platelets down to 555. Considering age and quality of life issues..........

Besremi - CBC after the 11th dose kept at 175mcg

Happy HCT!

Interferon and alcohol interaction

vitamin B12 supplement ( 21 cyanocobalamin) and polycythemia

chickenpox

Medixation

An antibody for myelofibrosis – “that’s a true discovery”

Travel Insurance to Spain with MF

Post Shingle Aciclovir

pin and needle like sensation in back

20 year mystery continues

just wondering

Update

% JAK2 and Neutrophils (I think!)

Any experience Leeds haematologists?

Besremi

Besremi - Sore throat, swollen/bleeding gums

Post Covid infection - nearly 4 weeks since positive test and treated with antivirals - have ET and still feel awful

Painful hip and leg pain

don’t know how I should feel

E2T2 mutation

Medication PV advice please

interferon and psoriasis

New member introduction

Fundraising News –September Blood Cancer Awareness Month challenge ‘Walk to Support’ and the St Thomas’ Abseil

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 July 2022

CBD oil for pain?

NGS Panel - Multiple Mutations/ Does Order Matter?

stinging itch

MF high risk Mutations

ET diagnosed at 85 yrs. Failed HU because of side effects but platelets down to 555. Considering age and quality of life issues..........

Besremi - CBC after the 11th dose kept at 175mcg

Happy HCT!

﻿Interferon and alcohol interaction

vitamin B12 supplement ( 21 cyanocobalamin) and polycythemia

chickenpox

Medixation

An antibody for myelofibrosis – “that’s a true discovery”

Travel Insurance to Spain with MF

Post Shingle Aciclovir

pin and needle like sensation in back

20 year mystery continues

just wondering

﻿Update

% JAK2 and Neutrophils (I think!)

Any experience Leeds haematologists?

Besremi

Besremi - Sore throat, swollen/bleeding gums

Post Covid infection - nearly 4 weeks since positive test and treated with antivirals - have ET and still feel awful

Painful hip and leg pain

don’t know how I should feel

E2T2 mutation

﻿Medication PV advice please

interferon and psoriasis

New member introduction

Fundraising News –September Blood Cancer Awareness Month challenge ‘Walk to Support’ and the St Thomas’ Abseil

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Interferon and alcohol interaction

Update

Medication PV advice please