Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,843 posts

All posts for September 2022

The MPN Voice Living with MPNs Day – Saturday 5th November 2022 REGISTRATION NOW OPEN!

This will be the 6th Living with MPNs Day that MPN Voice has hosted, it is an all-day event held in London, for MPN patients, their family and friends to hear...

This will be the 6th Living with MPNs Day that MPN Voice has hosted, it is an al...

Mazcd

Partner•2 years ago

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Heavy legs!

Morning all, Sad news for us in the UK yesterday, RIP Ma’am just wanted to ask if anyone has or is experiencing the above. My legs this morning around my...

Morning all, Sad news for us in the UK yesterday, RIP Ma’am just wanted to as...

Grendall

•2 years ago

11 Replies

Ruxolitinib update.

Two weeks today I started Ruxolitinib. Within day two, my back pain by my ribs went, spleen pain is easing, day sweats have gone, night sweat are wasting...

Two weeks today I started Ruxolitinib. Within day two, my back pain by my ribs ...

wendycu

•2 years ago

27 Replies

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Dx of ET vs PV

Some of this is likely redundant, but we have many posts on this subject and plenty of curiosity. Here is a bit more, as always no single report is the last...

Some of this is likely redundant, but we have many posts on this subject and ple...

EPguy

•2 years ago

27 Replies

Lynda Carter "Wonder Woman" funding MPN Research

Today on Instagram Lynda Carter revealed her husband's cause of death was myelofibrosis that transformed into AML. She is starting a partnership with City of...

Today on Instagram Lynda Carter revealed her husband's cause of death was myelof...

Lena70

•2 years ago

4 Replies

an additional diagnosis ..

been a while since I wrote here, thanks to those who’ve replied back then, I’ve been diagnosed with ET jak2 in June 2019, been on anagrelide since July 2021...

been a while since I wrote here, thanks to those who’ve replied back then, I’ve...

Maella

•2 years ago

12 Replies

Silence Therapeutics Announces FDA Fast Track Designation for SLN124, a Novel Investigational siRNA Therapy for the Treatment of PV

"The granting of Fast Track Designation represents an important recognition by the FDA of SLN124’s potential to address a significant unmet need in the...

"The granting of Fast Track Designation represents an important recognition by t...

Manouche

•2 years ago

2 Replies

What does the below graph mean about probability of disease progression in ET?

This study (link below), is from a young cohort of MPN patients. If you read the study, it says that 7.3% progressed to MF during the duration of the follow...

This study (link below), is from a young cohort of MPN patients. If you read the...

Aneliv9

•2 years ago

46 Replies

itching withMPN

I have been taking Fexofenadine for severe itching for several months with huge relief. Suddenly the itching has returned to a fairly unbearable level; even...

I have been taking Fexofenadine for severe itching for several months with huge ...

Itch

•2 years ago

25 Replies

Dentists with pv

hi all 1st appoitment with my dentist since being diagnosed. They say i need a filling but had to phone my consultant first incase of any issue. My key worker...

hi all 1st appoitment with my dentist since being diagnosed. They say i need a f...

Mandz12

•2 years ago

22 Replies

Help just been seen by consultant

hello all. Had Et for 12 years Interferon for 11 years Asprin. The last 12 months i have been off interferon for 1 year platlets normal range. Today...

hello all. Had Et for 12 years Interferon for 11 years Asprin. The last 12 mo...

Jbut

•2 years ago

9 Replies

Ruxolitinib and NSAIDs

Would anyone care to comment on the Jakafi label warnings against using NSAIDs? There is reportedly an increased risk of bleeding. If this is really the case,...

Would anyone care to comment on the Jakafi label warnings against using NSAIDs? ...

sbs_patient

•2 years ago

15 Replies

Bone marrow result - cryptic

Hi All. I have ET, and I had a bone marrow biopsy in June. I haven't had the formal results back in a letter from my consultant. The GP told me there was a...

Hi All. I have ET, and I had a bone marrow biopsy in June. I haven't had the for...

Fjdjdjdjd

•2 years ago

12 Replies

MPN ET and random low leg swelling

Hi just wondering if anyone has experienced this. My husband was diagnosed with MPN, ET in 2018 aged 59 and has taken daily Hydroxycarbamide and alternate...

Hi just wondering if anyone has experienced this. My husband was diagnosed wi...

jyah

•2 years ago

15 Replies

BMB results

Hello After 6 long weeks I’ve finally got my bmb results. Spoke to the doctor this morning, biopsy showed some fibrosis/scarring, apparently Anagrelide, which...

Hello After 6 long weeks I’ve finally got my bmb results. Spoke to the doctor t...

lizzziep

•2 years ago

18 Replies

Camu powder

just remembered years ago i took camu instead of vit c. It does say dont take if taking chemo drugs as high vit c content but ive always taken vit c tablets...

just remembered years ago i took camu instead of vit c. It does say dont take ...

Mostew

•2 years ago

2 Replies

Visit with new Hem/Onc Dr went well!

Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any...

Hi Friends, I had my first visit with my new local doctor. He is Associate Head...

Wewo01

•2 years ago

10 Replies

Conversion chart from Peg to Besremi?

Hello all, Well, after 7 long months on the clinical trial, I am pulling the plug today. There are a variety of reasons. First and foremost is that I can't...

Hello all, Well, after 7 long months on the clinical trial, I am pulling the p...

Miriammusic

•2 years ago

8 Replies

Does any treatment help with fatigue?

Hi friends! Diagnosed with ET approximately 8 years ago, but like many of you, there are indications that I actually had ET for several years prior to that....

Hi friends! Diagnosed with ET approximately 8 years ago, but like many of you, t...

LT55

•2 years ago

6 Replies

Tingling Toes

Hi hope you are all well. I have been diagnosed with Pre Myelofibrosis from having ET for 13 years. I am waiting to start Pegylated Interferon in October. For...

Hi hope you are all well. I have been diagnosed with Pre Myelofibrosis from hav...

JeniMac

•2 years ago

25 Replies

?Scuba Diving

Hi Has anyone done scuba diving following diagnosis of ET? My platelets are good & I am going to Greece soon-would like to give scuba diving a try..

Hi Has anyone done scuba diving following diagnosis of ET? My platelets are goo...

Annula

•2 years ago

16 Replies

hydroxycarbamide and working any tips and suggestions.

Good afternoon I am looking for tips and some advice on how to manage side effects of hydroxycarbamide and working full time. I currently work within the NHS...

Good afternoon I am looking for tips and some advice on how to manage side effe...

cheeks1

•2 years ago

14 Replies

Spacing between Peg injections

Hello, I’ve been on Peg for PV for 2 years. Now down to 45 mcg every two weeks. Platelets remain where my doc wants them (between 100 and 200). Despite PV, I...

Hello, I’ve been on Peg for PV for 2 years. Now down to 45 mcg every two weeks. ...

Mymble

•2 years ago

11 Replies

impact on working life

hi everyone, Just wondering if anyone is struggling with the above due to their ongoing symptoms,,, Has anyone found that it is impacting that much that...

hi everyone, Just wondering if anyone is struggling with the above due to thei...

Grendall

•2 years ago

17 Replies

Jak2 V617F.

Hello friends heard loads about the use of Acetyclysteine to help put out the flames of inflammation. I have PV,and thrombosithemia and currently taking...

Hello friends heard loads about the use of Acetyclysteine to help put out the f...

Hidden

•2 years ago

12 Replies

ET jak2

Hi has anyone on HU needed a blood transfusion

Daisyduke40

•2 years ago

3 Replies

shoulder pain

Hi everyone I’ve been experiencing pain in my right shoulder. I initially put it down to cycling but after a couple of months it is still painful especially...

Hi everyone I’ve been experiencing pain in my right shoulder. I initially put ...

Charliegirl551

•2 years ago

23 Replies

Aquagenic puritis?

About 2 months ago, I went swimming and after showering I had severe burning, stinging, biting sensations all over my body which lasted for about half an hour....

About 2 months ago, I went swimming and after showering I had severe burning, st...

havashan

•2 years ago

37 Replies

Pegasys & Liver

Been on Pegasys for 8 years. Is it possible for liver issues to surface now or does it usually cause issues pretty soon after starting ? Seeing substantial...

Been on Pegasys for 8 years. Is it possible for liver issues to surface now or ...

Mountainbiker12

•2 years ago

4 Replies

Chronic Belly Bloating on Hydrea

Hi All, I've been on hydrea (hydoxycarbamide 500mg) for about 20 mths now. Platelets are normal, so my dose is reduced to 500mg daily. I am still suffering...

Hi All, I've been on hydrea (hydoxycarbamide 500mg) for about 20 mths now. Plat...

Hidden

•2 years ago

15 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2022

The MPN Voice Living with MPNs Day – Saturday 5th November 2022 REGISTRATION NOW OPEN!

Heavy legs!

Ruxolitinib update.

Dx of ET vs PV

Lynda Carter "Wonder Woman" funding MPN Research

an additional diagnosis ..

Silence Therapeutics Announces FDA Fast Track Designation for SLN124, a Novel Investigational siRNA Therapy for the Treatment of PV

What does the below graph mean about probability of disease progression in ET?

itching withMPN

Dentists with pv

Help just been seen by consultant

Ruxolitinib and NSAIDs

Bone marrow result - cryptic

MPN ET and random low leg swelling

BMB results

Camu powder

Visit with new Hem/Onc Dr went well!

Conversion chart from Peg to Besremi?

Does any treatment help with fatigue?

Tingling Toes

?Scuba Diving

hydroxycarbamide and working any tips and suggestions.

Spacing between Peg injections

impact on working life

Jak2 V617F.

ET jak2

shoulder pain

Aquagenic puritis?

Pegasys & Liver

Chronic Belly Bloating on Hydrea

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 September 2022

The MPN Voice Living with MPNs Day – Saturday 5th November 2022 REGISTRATION NOW OPEN!

Heavy legs!

Ruxolitinib update.

Dx of ET vs PV

Lynda Carter "Wonder Woman" funding MPN Research

an additional diagnosis ..

Silence Therapeutics Announces FDA Fast Track Designation for SLN124, a Novel Investigational siRNA Therapy for the Treatment of PV

What does the below graph mean about probability of disease progression in ET?

itching withMPN

Dentists with pv

Help just been seen by consultant

Ruxolitinib and NSAIDs

Bone marrow result - cryptic

MPN ET and random low leg swelling

BMB results

Camu powder

Visit with new Hem/Onc Dr went well!

Conversion chart from Peg to Besremi?

Does any treatment help with fatigue?

﻿Tingling Toes

?Scuba Diving

hydroxycarbamide and working any tips and suggestions.

Spacing between Peg injections

impact on working life

﻿Jak2 V617F.

﻿ET jak2

shoulder pain

Aquagenic puritis?

Pegasys & Liver

Chronic Belly Bloating on Hydrea

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Tingling Toes

Jak2 V617F.

ET jak2