Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for February 2020

Tinnitus??

Hello my MPN family, ET with JAK2+ on Pegulated Interferon Apha 2, 135mc every three weeks. I been having Tinnitus in my both ears and I would like to ask if...

Hello my MPN family, ET with JAK2+ on Pegulated Interferon Apha 2, 135mc every ...

light

•4 years ago

25 Replies

Pegasys

Hi Everyone! I was wondering if anyone else on pegasys has been told that in the next 5 years it is stopping being produced worldwide. At my last haematology...

Hi Everyone! I was wondering if anyone else on pegasys has been told that in the...

Beartime

•4 years ago

5 Replies

Question about hydroxy and being low risk PV patient

Hello all. Wanted to know if since I am low-risk and currently on low dose asprin with phlebotomies occurring probably every 4-6 weeks, if I should stick with...

Hello all. Wanted to know if since I am low-risk and currently on low dose aspri...

Cllfairy07

•4 years ago

34 Replies

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Researchers discover Mediterranean diet ingredient may extend life

Post by MPN-MATE Admin » Sat Feb 22, 2020 12:51 am Hey everyone... :D I realise that most of you might already be well aware of the benefits of having a...

Post by MPN-MATE Admin » Sat Feb 22, 2020 12:51 am Hey everyone... :D I real...

socrates_8

•4 years ago

8 Replies

MPN-MATE RESEARCH FOUNDATION

Post by MPN-MATE Admin » Fri Feb 21, 2020 9:36 pm Hey everyone... 8-) Just a little update concerning some great news for the MATES website in Australia......

Post by MPN-MATE Admin » Fri Feb 21, 2020 9:36 pm Hey everyone... 8-) Just a l...

socrates_8

•4 years ago

19 Replies

Are you in Nottingham?

Hi how can I get more details of the group?

Richardwgf

•4 years ago

2 Replies

CBD?

Has anyone noticed success on CBD? I am back on CBD for my 3rd time. Two times prior to this I took it for 60 days and noticed a significant reduction in the...

Has anyone noticed success on CBD? I am back on CBD for my 3rd time. Two times...

MJL1977

•4 years ago

9 Replies

Fatigue and Craving!

Hi, I was diagnosed with ET JAK 2 last year and I'm 60 this year. Like many of us I've been suffering with fatigue, this seems to have got worse lately. I'm on...

Hi, I was diagnosed with ET JAK 2 last year and I'm 60 this year. Like many of u...

Trueblue8

•4 years ago

25 Replies

Anyone have horrible side effects to amoxicillin 875 mg 2 times a day

Hi I have been healthy but on New Year's I want into urgent care for a sinus infection and got amoxicillin 875 mg 2 times a day and ever since then the...

Hi I have been healthy but on New Year's I want into urgent care for a sinus inf...

mochapie

•4 years ago

8 Replies

MPN News for treatment primary myelofibrosis, post-PVMF, Post ET-MF and Primary myelofibrosis

Hello all. It has been a while but I wanted to share this latest info. The combination of panobinostat (Farydak) and ruxolitinib (Jakafi) demonstrated efficacy...

Hello all. It has been a while but I wanted to share this latest info. The combi...

mammared

•4 years ago

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Haemo Update

Hello all! I had my consultation with Haemo Dr. this morning after a four week interval. My platelets have increased since last month's visit when they had...

Hello all! I had my consultation with Haemo Dr. this morning after a four week i...

azaelea

•4 years ago

13 Replies

Chronic fatigue. Any clues? All help appreciated.

Hi Everyone, I had an email this morning from a lady whom I buddy. I’ve tried to attach it in a photo. I don’t have too much trouble with fatigue unless I...

Hi Everyone, I had an email this morning from a lady whom I buddy. I’ve tried to...

Loubprv

Volunteer•4 years ago

26 Replies

My latest numbers are good

My latest bloods are good.. I've updated my excel Blood book...

shiftzz

•4 years ago

5 Replies

Diazapam

Any body take Pegasus and diazepam I’ve got such a bad neck and spasms I got a script of the dr for diazepam but I get my injection from the hospital just...

Any body take Pegasus and diazepam I’ve got such a bad neck and spasms I got a s...

Hahag

•4 years ago

2 Replies

Hydroxyurea/medac

I am new here, I have been diagnosed with positive with V617F JAK2 . I take Hydroxyurea/medac 500 mg three times a week. I there any one out there with the...

I am new here, I have been diagnosed with positive with V617F JAK2 . I take Hy...

krotsida

•4 years ago

15 Replies

Newbie from Germany

Hi Pleased to find this group. I am 59 diagnosed with ET for around two years following a bone marrow aspiration test. Live in Germany my thrombocytes are 940....

Hi Pleased to find this group. I am 59 diagnosed with ET for around two years fo...

Dovme

•4 years ago

28 Replies

Flu jab

Hi all Just wondering if others with mpns have had the flu jab? I have ET jak2 + and it was recommended by my gp I have the flu jab. I have a few other health...

Hi all Just wondering if others with mpns have had the flu jab? I have ET jak2 +...

Camelian

•4 years ago

29 Replies

Unexplained Polycythemia

Hi there, I was just diagnosed with unexplained secondary polycythemia, I am negative for the JAK2 mutation but they haven't tested for Exon 12 yet. It seems...

Hi there, I was just diagnosed with unexplained secondary polycythemia, I am neg...

Confusedatpolycythem

•4 years ago

26 Replies

Pegasys travel?

How to travel for long periods with Pegasys? How do you keep it cold?

Trli

•4 years ago

16 Replies

Homeopathy medicine

Does any member has experience or consulted homeopathic doctor for treatment of MPNs? Any results or usage outcome ??

Does any member has experience or consulted homeopathic doctor for treatment of ...

Aojai

•4 years ago

17 Replies

New to Forum

Hello I’m new to the Forum and just wanted to say hello to everyone. I’m 51, female and diagnosed with ET JAK 2+ last summer on the basis of my platelets but...

Hello I’m new to the Forum and just wanted to say hello to everyone. I’m 51, fem...

Mymble

•4 years ago

17 Replies

High platelets for 5 years now

I just found out my platelets are 564 . For about five years now they're always running a little high anywhere from 450 to 520 but now they are at the...

I just found out my platelets are 564 . For about five years now they're alway...

mochapie

•4 years ago

28 Replies

Does anyone else take warfarin

I have just been diagnosed with ET and I am due to start on Hydroxycarbamide on Wednesday - I have been on warfarin due to AF for approx 15 years - I was...

I have just been diagnosed with ET and I am due to start on Hydroxycarbamide on ...

driftstream

•4 years ago

11 Replies

Good article for anyone new to PV

https://specials.verywell.com/polycythemiavera?utm_campaign=blooddisorder_informed-2&utm_source=Facebook&utm_medium=con&utm_content=3016&fbclid=IwAR2Jvhx4Qfwb3F

https://specials.verywell.com/polycythemiavera?utm_campaign=blooddisorder_inform...

Paul123456

•4 years ago

2 Replies

ET vs Having a Baby

Hi there, please bear with me as English is not my first language but I'll do my best. We could really use some opinions. :( We're not here trying to...

Hi there, please bear with me as English is not my first language but I'll do my...

SunnyAlice

•4 years ago

3 Replies

Red face

Does anyone else get red in the face after working out? I have always worked out and never gotten red except for in the summer and it was 90 degrees. Now I...

Does anyone else get red in the face after working out? I have always worked ou...

Cookiebaker

•4 years ago

8 Replies

"a finding which could herald a major breakthrough in treatment"

Here is the article. Looks very important. Somebody here who has better understanding of this topic, please read the article and post a comment and possibly,...

Here is the article. Looks very important. Somebody here who has better understa...

stai

•4 years ago

4 Replies

Anyone with both GCA and also Polycythemia Vera ?

Is there anyone on this group who has GCA alongwith the MPN Polycythemia Vera ?

Is there anyone on this group who has GCA alongwith the MPN Polycythemia Vera ? ...

Iwillwin123

•4 years ago

22 Replies

Does Hydroxycarbamide make it take longer for you to recover from an infection?

Hi everyone! I'm new on this site and I'm interested in learning about the experiences of people with Essential Thrombocythaemia (ET). I was diagnosed with...

Hi everyone! I'm new on this site and I'm interested in learning about the expe...

JaK2ET

•4 years ago

7 Replies

Chronic cough and MF

Hey, everyone, I was diagnosed with post ET MF last September. It seemed to coincide with a cough which I attributed to allergies and my hematologist doesn’t...

Hey, everyone, I was diagnosed with post ET MF last September. It seemed to coin...

Cja1956

•4 years ago

13 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2020

Tinnitus??

Pegasys

Question about hydroxy and being low risk PV patient

Researchers discover Mediterranean diet ingredient may extend life

MPN-MATE RESEARCH FOUNDATION

Are you in Nottingham?

CBD?

Fatigue and Craving!

Anyone have horrible side effects to amoxicillin 875 mg 2 times a day

MPN News for treatment primary myelofibrosis, post-PVMF, Post ET-MF and Primary myelofibrosis

Haemo Update

Chronic fatigue. Any clues? All help appreciated.

My latest numbers are good

Diazapam

Hydroxyurea/medac

Newbie from Germany

Flu jab

Unexplained Polycythemia

Pegasys travel?

Homeopathy medicine

New to Forum

High platelets for 5 years now

Does anyone else take warfarin

Good article for anyone new to PV

ET vs Having a Baby

Red face

"a finding which could herald a major breakthrough in treatment"

Anyone with both GCA and also Polycythemia Vera ?

Does Hydroxycarbamide make it take longer for you to recover from an infection?

Chronic cough and MF

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