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MPN Voice

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Pegasys Co-Pay

Hello All - I'm new here, so glad to join your forum. Just found out my month...
Proton_1 profile image

Critical Illness - ET

Hello My husband has been diagnosed with ET, and I am wondering if anyone kn...
Chez311 profile image

Fibromyalgia similar symptoms.

I have fibromyalgia for years, and was born with scoliosis. I found a lot of the...
mag123ben profile image
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Massive nose bleed.

On Tuesday morning at 1 am my nose started bleeding, one nostril, constant stre...
lizzziep profile image

Updated Numbers Based on Recent Appointment

Hi, I'm about 10 months in to starting Besremi and just had a phlebotomy. RBC h...

Pegasys & Hydrea

I am wondering if anyone is taking both in combination? I am not getting the res...
russkatt profile image

Pain in heels.. Interferon related or not?

Hi, just wondering if anyone has had painful heels especially when walking while...
beckyluck profile image

stem cell for et?

Would stem cell transplant be an option for ET? I cannot take the Hydrea or Ana...

Actinic Keratosis

Good morning from the US of A, Yesterday I received notification from a scalp b...
mbr8076 profile image

Wanted to send some positive vibes

just wanted to wish everyone a good week. Happy Easter, Happy Spring. On my jo...
KLCTJC profile image

Migraines

Hi, I was diagnosed at 41 back in 2019 with ET Jak 2 and my levels have always ...
Lynzyc profile image

ET and arthritis

Hi all, I hope everyone is doing well as they can be… I was wondering if anyon...
Grendall profile image

Advice please on headaches and fatigue please

I am a relatively fit and healthy 57 year old, no health complications so when I...
Yarnhabit profile image

Gallstones and MPN’s

Hi guys, does anyone know if gallstones are more common or significant in anyway...
DarcyShepp profile image

ET, hydrea and feeling fatigued and depressed

Hi all, I haven't been on here for a while. I was diagnosed with ET 3 years ago....
Deya08 profile image

AXSL1 gene mutation

Hello Everyone, I have pmf-MF with JAK2 mutation and have been taking Rux since...
merlisa profile image

SCT journey update No.2

Hi all, following on from my last post, have just heard from my clinical nurse t...
LFCLove profile image

Princess of Wales

Many of you will have seen the Princess of Wales is having preventative chemothe...
lizzziep profile image

"Managing Myeloproliferative Neoplams" - book edited by Ruben Mesa and Claire Harrison

Would anyone like my copy of the above book? I will send it to you.

A little bit scared!

Hello, I have just been diagnosed with Intermediate Myelofibrosis, feeling very...

Another antibody for CALR is in clinical trials

Hi All, I just heard about another antibody treatment for CALR MF and ET that is...
CanadaG profile image

Switch from Besremi to Ruxolitinib

Dear all After 18 months on Besremi my oncologist and I made the decision to mo...
gjh8733 profile image

Update 8.0 - Next chapter

As you may remember from previous posts, my HCT has been creeping steadily up. ...

Haemachromatosis?

Hello. Just had most recent set of blood results and appointment with Haematolog...
Shanders profile image

Peg and rash

Hi,I dx 2011 with Et jak2. Treated with 500mg HU and aspirin until experiencing ...
gbeam profile image

Grounding? And other natural remedies?

Curious about results from "grounding." Grounding refers to absorbing the natur...
PMac314 profile image

Thank you and latest blood results

Thank you for sharing your experiences with Ruxolitinib. I have now completed ...
artydutch profile image

Low saturation with PV and Jakavi 20

I have had PV since two years. Rux started december '23. Good results with HB an...
Quitojohn profile image

Don’t Go It Alone

Hi I’ve just had the experience of going to an important consultant appointme...

Recent visit with my MPN Dr

(See end for context of this plot) I've been on Rux since Apr '23. At my rece...
EPguy profile image
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