Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for November 2018

Undiagnosed officially for more than 10yrs.

Hi all I’m a newby and still officially undiagnosed but to cut a loooooong story short I’ve had around 6-8 venasections over the past 10 or so years due to...

Hi all I’m a newby and still officially undiagnosed but to cut a loooooong story...

Loubee27

•5 years ago

12 Replies

Allopurinol when first taking Hydroxy

Hi again everyone. Since writing a post I have finished my 3 weeks' radiotherapy now for breast cancer, during which time my Hydroxy for ET was stopped. I'm...

Hi again everyone. Since writing a post I have finished my 3 weeks' radiotherapy...

azaelea

•5 years ago

12 Replies

cancerconcern1

hi Cancerconcer1 i know you can by co/codmal 8/500mg over the counter at a chemist try taking them but you may find you get constipation but they are a good...

hi Cancerconcer1 i know you can by co/codmal 8/500mg over the counter at a chemi...

Scottishterrier

•5 years ago

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First day of Pegasys.

After two and half years on hydroxycarbamide, today was my first day on Pegasys. Injected myself for the first time ever, didn’t hurt one bit and it wasn’t as...

After two and half years on hydroxycarbamide, today was my first day on Pegasys....

Raphael_UK

•5 years ago

12 Replies

Roller Coaster

I was diagnosed with ET February 2016 with platelet count just over 2000. Onto Hydrea, dose slowly increasing to 3x500mg capsules 3 days a week and 2x500mg...

I was diagnosed with ET February 2016 with platelet count just over 2000. Onto H...

Chris3875

•5 years ago

8 Replies

Jakafi side effects

Hi everyone, I’m 62, diagnosed w et about 12 years ago, pv a few years later. Terrible itching, esp in high temperatures, was driving me crazy. I got on...

Hi everyone, I’m 62, diagnosed w et about 12 years ago, pv a few years later. T...

Chicagopv

•5 years ago

8 Replies

Clear smear but referred to gynaecological oncologist. Any experience of this ?

I went for a smear test and the nurse said I was very inflamed and bleeding. She referred me to gp. He made an emergency 14 day referral to a gynaecological...

I went for a smear test and the nurse said I was very inflamed and bleeding. She...

Kwebb

•5 years ago

4 Replies

PV and/or ET - JAK2+ - currently asymptomatic

This is my first posting with the support group. I was diagnosed with PV in March 2018 where at that point my hematocrit was 62 and of course the hemoglobin...

This is my first posting with the support group. I was diagnosed with PV in Marc...

Pat032018

•5 years ago

4 Replies

Primary, Secondary PV or...

Hi, first post here! Last month I got checked into hospital with "apparent polycythaemic picture" with Haematocrit at nearly 60% but everything else normal....

Hi, first post here! Last month I got checked into hospital with "apparent polyc...

devilish33

•5 years ago

2 Replies

Hydroxycarbamide

My partner has just started on 500mg hydroxycarbamide. He was diagnosed with PV 5 months ago. Is this quick starting on this drug. They have been using...

My partner has just started on 500mg hydroxycarbamide. He was diagnosed with PV...

Dennykev

•5 years ago

7 Replies

Essential Thrombocythemia & Pain Killers

Hi All. I was just wondering what pain killers others have used for Bone pain headaches etc with ET. I paid a visit to my GP which again was a doctor i have...

Hi All. I was just wondering what pain killers others have used for Bone pain he...

Mycancerconcern1

•5 years ago

14 Replies

Anyone for Vitamin D?

Hi all, I saw my GP today and learned that I am Vitamin D deficient with a reading of 25 versus a suggested range of 80-150. Has anyone else had this problem...

Hi all, I saw my GP today and learned that I am Vitamin D deficient with a readi...

Ovingite

•5 years ago

23 Replies

London Meeting

Anyone going to the MPNVoice extravaganza in London on Friday, which has been fully booked for ages? I am and would be happy to put faces to names. I tried...

Anyone going to the MPNVoice extravaganza in London on Friday, which has been fu...

MFBMT2011

•5 years ago

30 Replies

Idiopathic erythrocytosis confirmed

Hi Guys, just been at haem. My jak Xeon test was also negative so my haem thinks I have idiopathic erythrocytosis which means I'm still producing too many...

Hi Guys, just been at haem. My jak Xeon test was also negative so my haem thin...

Aime

•5 years ago

29 Replies

Do I have an MPN?

Hello, I'm new on here but have been quite obsessively reading posts for quite a while! I've had elevated platelets for 4 FBC over 10 weeks and have been...

Hello, I'm new on here but have been quite obsessively reading posts for quite a...

RedSunrise

•5 years ago

12 Replies

Biggles

Hope everyone is enjoying the post from Peter and his biggles stories most mornings.

Hope everyone is enjoying the post from Peter and his biggles stories most morni...

Hughley

•5 years ago

6 Replies

I THINK I HAVE A SPLEENIC INFART?

Help needed,pain in abdomin, checked on Google and it looks like the symptoms of spleenic infant!

Help needed,pain in abdomin, checked on Google and it looks like the symptoms of...

john0084

•5 years ago

6 Replies

New to the site

Hi everyone I am a 67 year old New Zealander living in London and was recently dagnosed with Prefibriotic Myelofibrosis. Scattered symptoms for quite some...

Hi everyone I am a 67 year old New Zealander living in London and was recently d...

kiwitraveller

•5 years ago

26 Replies

Fedratinib by Celgene, offered on Expanded Access Program for Myelofibrosis patients (in the U.S.)

I can't say anything about the UK, but we will know more soon. Thought you might find this interesting -...

I can't say anything about the UK, but we will know more soon. Thought you might...

PVReporter

•5 years ago

4 Replies

It's been a great day!

Hi folks, Well, what a turn around! For what seems like an eternity, but is actually about 3 months, I have been plagued by fatigue and any meaningful walking...

Hi folks, Well, what a turn around! For what seems like an eternity, but is actu...

Ovingite

•5 years ago

26 Replies

I have a panic disorder, please advise coz I'm getting very shacky nerves on the left hand palm.thanks

I'm getting cold sweaty palms and rapid nerve movement on the left palm that causes the hand not to be stable and shaky what can it be

I'm getting cold sweaty palms and rapid nerve movement on the left palm that cau...

Patrick3000

•5 years ago

7 Replies

Leg fasciculations (twitches) anyone?

Hi there, I'm Alex, 34 y/o and it looks like I have an ET, with platelets 600-700, JAK2+ (17% burden), other blood parameters seem to be in the normal range....

Hi there, I'm Alex, 34 y/o and it looks like I have an ET, with platelets 600-70...

Alexbits

•5 years ago

30 Replies

How soon does HU give results ?

How soon does hydroxyurea start showing results in reducing the platelet count ?

How soon does hydroxyurea start showing results in reducing the platelet count ?...

Iwillwin123

•5 years ago

20 Replies

PV stinging itch and Ruxolitinib

Hi all I really can’t wait to share how Rux has changed by daily life in less than a week. I was approved for Ruxolitinib and started taking it a week ago. I...

Hi all I really can’t wait to share how Rux has changed by daily life in less th...

S031251

•5 years ago

13 Replies

Newbie

Hello everyone, I'm new to the group and wanted to introduce myself. I'm Jim, I'm 58, and I was just diagnosed with PV on 10/15/18. I had a routine physical...

Hello everyone, I'm new to the group and wanted to introduce myself. I'm Jim, I...

JP2018

•5 years ago

15 Replies

Ketogenic Diet

I am considering the ketogenic diet. About 16 years ago I went on the Atkins Diet but I could not stick to it at all. But the science behind low carbohydrate...

I am considering the ketogenic diet. About 16 years ago I went on the Atkins Di...

Searcher56

•5 years ago

22 Replies

Finally unda 5hundy

Just got results back from hematology. Platelets at 460 so bk down to just 2 pills a day. Feeling good but still broke as .oh well who needs money to live...

Just got results back from hematology. Platelets at 460 so bk down to just 2 pil...

Frankydafish

•5 years ago

14 Replies

Hydroxy To Pegasys

I’m MPL/ET 2 years- I am about to come off hydroxy to go on to Pegasys, if you swapped, did you leave a gap between, if so, how long? Thank you for your help...

I’m MPL/ET 2 years- I am about to come off hydroxy to go on to Pegasys, if you s...

Raphael_UK

•5 years ago

11 Replies

Rux and Hydroxy

I had my haematologist appointment this morning. Platelets are still high after 8 months on Ruxolitinib 20mg BD so I am to start Hydroxycarbamide 500mg each...

I had my haematologist appointment this morning. Platelets are still high after ...

Graham7694

•5 years ago

11 Replies

Winter blues

Hi,I was diagnosed with ET in february 2018. I am still coming to terms with the diagnosis.My main issue at the moment is with joint pain and stiffness in my...

Hi,I was diagnosed with ET in february 2018. I am still coming to terms with the...

Cando67

•5 years ago

8 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2018

Undiagnosed officially for more than 10yrs.

Allopurinol when first taking Hydroxy

cancerconcern1

First day of Pegasys.

Roller Coaster

Jakafi side effects

Clear smear but referred to gynaecological oncologist. Any experience of this ?

PV and/or ET - JAK2+ - currently asymptomatic

Primary, Secondary PV or...

Hydroxycarbamide

Essential Thrombocythemia & Pain Killers

Anyone for Vitamin D?

London Meeting

Idiopathic erythrocytosis confirmed

Do I have an MPN?

Biggles

I THINK I HAVE A SPLEENIC INFART?

New to the site

Fedratinib by Celgene, offered on Expanded Access Program for Myelofibrosis patients (in the U.S.)

It's been a great day!

I have a panic disorder, please advise coz I'm getting very shacky nerves on the left hand palm.thanks

Leg fasciculations (twitches) anyone?

How soon does HU give results ?

PV stinging itch and Ruxolitinib

Newbie

Ketogenic Diet

Finally unda 5hundy

Hydroxy To Pegasys

Rux and Hydroxy

Winter blues

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