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MPN Voice
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PV question

Hi, I’m new to this site and would like to talk to others in a similar situation...

CBD Oil

I am looking into cbd oil and if it helps in anyway with my ET. I take hydroxyur...

On the up

My platelets are rising again on HU 1000mg 5 days 500 mg 2 days. Starting to thi...

Glasgow Forum

Thanks so much for organising yesterday's forum. It was really interesting to he...

Cancer patients more likely to die from heart disease, stroke, study found

Post by MPN-MATE Admin » Wed Dec 11, 2019 1:14 am Hey everyone... :D Here is ...

Mouth ulcers 😡

Hi all I’m not seeing my haematologist until mid January so I thought I would as...

Skin biopsy

I have a patch of skin which needs removing for biopsy from my cheek on my face ...

need help

Hello for years my blood tests show an elevation of hematocrit and hemoglobin. t...

ASH 2019 | Ropeg in polycythemia vera: long-term PROUD-PV and CONTI-PV results

https://www.vjhemonc.com/video/elvsbiyxlco-ropeg-in-polycythemia-vera-long-term-...

SMC decision regarding Ruxolitinib (Jakavi) for PV patients in Scotland

We are very pleased to announce that following a full submission made to the SMC...

Pegasys and breast feeding

Hi all, After some advice... I think that pegasys and breast feeding is contra ...

Anyone on Pegasys experiencing a lowering of white blood cells?

I have been on Pegasys for PV since December 2017 and it has brought my haematoc...

Stool test, microbiome and MPN

I am thinking about taking a stool test in order to optimize my diet and reduce ...

Headaches and ET with hydrea

I have recently been diagnosed with ET. I had my enlarged spleen removed when I ...

Sheffield seminar

Hi I would just like to say it was great to meet people at the MPNVoice. Hope e...

Thank you

Just a big thank you to Maz, Nona and Dr Francis for organising the Sheffield Fo...

Extreme fatigue

Good morning all. I never post but felt perhaps someone could help. My fatigue i...

Vitamin D

Morning!! Just wanted to share... I was feeling super fatigued of late, like sl...

Wavy blood vessels at the back of the eye? Could this be associated with ET??

I had an eye test this morning and the optician said my blood vessels at the bac...

Eating only during a 10-hour window improved health for those with metabolic syndrome

Post by MPN-MATE Admin » Sat Dec 07, 2019 1:57 am https://www.mpn-mate.com/foru...

Haemo visit update.

Hello all, I finally managed to see the doctor at Haematology I've been trying t...

Change from Interferon to Pegasys

At last my trust has approved the change from basic Interferon to Pegasys. I hav...

MNP using hydroxyurea and complaining about memory loss and fetigue

Hi, My mom was diagnosed with MNP a year ago and since then she is using hydrox...

Short video of Prof Harrison previewing Ash 2019

https://youtu.be/D5nz8j49lWE

Leg Pain / Cramps

Another night of excruciating leg pains / cramps, is anyone on medication that a...

Polycythemia and fatigue

I'm new on this list. I was diagnosed six months ago with Polycythemia vera. I...

CBD oil help

Is anyone of jakafi and warfarin and takes CBD oil for pain? Has it had any affe...

PV Jak2+ Just beginning Hydroxycarbamide

After many years of saying no - I've given in and start Hydroxycarbamide today. ...

Hair and Pegasys

Hi since starting Pegasys a few months ago I haven't had hair loss but my hair h...

New to HU

Hi I’m starting HU tomorrow. I’ve been taking Pegasys for 9 months with limited ...
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